“I don’t understand why, when Batten parents reach out to me and tell their child’s story, it always starts out so similar to mine. How their child was so healthy and so active and happy when little. Even a few of the kids have a laugh like Lydia’s that’s so contagious. They were enjoying life and love and family and their child was and is the center of all this goodness. Then major symptoms start to show, and you are told your hopes and dreams will just remain hopes and dreams. There’s all these what ifs and fears and nightmares, and any new possible sign or symptom of regression sends such a terrible feeling straight into your heart.”
I was at lunch in the middle of the workday, and was reading through the first email that was sent to me by a Batten mom. I had to stop because I found myself becoming overwhelmed by what I was reading. That is not out of the ordinary these days but it hasn’t always been that way. Sure there were things in the past that brought tears to my eyes. My father-in-law’s funeral that finished with Amazing Grace being played on the bagpipes is one example. That got to me. Especially as the hymn ended and the cemetery became silent and still. Yes, I guess I have always been a little on the sensitive side but not to this extent. Our friend Pamela Cameron lost her grandson Casen to Batten Disease and she still stays involved in the Batten community. Pam said that she never use to cry but now, she sheds tears for every child lost to Batten Disease. For me it seems to happen with every new story that I write.
There is this young mother that I have grown to respect a great deal. She has told me that anyone would have done what she is doing. People should know better than to tell me something like that and I have to disagree. She is not an ordinary mother and what she is doing is extraordinary to me. In fact, some would say that she possesses a rare type of character. Being a single mom is difficult enough in any day and age. To try to live on your own and maintain a home environment for your child while providing for their needs is a most difficult thing all by itself. What if on top of that, your child has a rare disease? What if the only way to get that child the treatment that they need requires you to pick up and move away from your family. You have to be driven by love. I have said it before and I will say it again. There is no love like a mother’s love and there is no love like the one which exists between a mother and her daughter.
What is it about this particular journey that has my attention? Why Batten Disease? There are so many other rare diseases that I could focus on. Perhaps one day. What about some of the forms of pediatric cancer that plague children. They are all worthy of increased attention. Certainly more needs to be done in the way of funding and research. When a parent finally receives the diagnosis of Batten Disease, it generally comes after an exhaustive search for answers. Sometimes they have had to deal with a number of different doctors to get answers and it takes a long time to get through the maze. Once the cause is determined, the news brings devastation. It is a struggle that I can in no way relate to. Afterwords, what is demonstrated in the way of very determined love is so profound to me. The plain truth is that I just feel drawn to you as families. I have a severe amount of appreciation for all that you go through. Do you find that to be a little creepy? I’m sorry, but I am pretty certain that I am not the only person that feels this way. I love having the opportunity to tell these stories as each one affects me in a very profound way. This next one perhaps more than any so far. Perhaps you’ll see why!
Lydia Rose would make her appearance into this world in the ordinary way but to this young mother and her family, it would be no ordinary event. I am certain that she was not the only baby that was born in the city of Chattanooga on the day of August the 27th, 2011. She was however, the most beautiful. That was the opinion of her family and you won’t get an argument from me on that point. She had all her fingers and toes and she was covered in brand new baby skin. She was Alicia’s princess from the very first sight of her. As she held little Lydia Rose, Alicia pondered the possibilities of what life would entail for her beautiful little baby girl. All the events that enter a young girl’s life were before her in waiting. As life would have it Alicia would begin parenting as a single mother. She, however, had very loving parents who supported her from the beginning as Lydia Rose entered their lives. Grandpa Wayne and Grandma Lisa were there, and not just there. They adored little Lydia from the very start.
Lilly, as she would come to be known, was the center of the families world and she most certainly had their attention. As she continued to grow, so did the entire families love and affection for her. If you had to describe her in only one word that word would be “cute”. If you were to add to that a little bit, you might say that she was “total cuteness”. When she learned how to talk the sweetest things came out of her little mouth. One example is how she would pronounce her colors. For Lilly, yellow wasn’t yellow. It was Lellow! As she continue to reach new milestones, her vocabulary increased. She would say the cutest things, and as such she had special names for her grandparents. Those names would be Granny and Papaw! Granny and Papaw loved their Lilly as they still do today. There is the saying concerning grandparents and their grandkids. Spoil them and send them home. Well there was a lot of that going on as their house was Lydia’s home. Lisa recalled to me the first time that she was trusted by her daughter to watch Lydia so that mom could go out. Granny was instructed to not hold her granddaughter the entire time. She however, could not help herself as the bond was too strong. She never put Lilly down. You’re so busted Granny! As far as Lydia’s Papaw was concerned, his Princess Lilly was and still is his ray of sunshine on a cloudy day!
Granny Lisa would tell me that Lydia was just like her momma Alicia when she was young. Lilly was adventurous and always on the go! She loved to run and especially loved to swing. She kept the family busy as she had so many activities that brought her joy. Painting and singing, as she loved music. Simple things like stacking blocks or feeding the ducks. What child doesn’t love feeding ducks? Running and jumping, hopping and climbing. Princess Lilly was on the move. She loved to blow bubbles and to draw with chalk, but maybe her most favorite thing was playing with play doh. Her Granny was careful to keep the house stocked with play doh because you can never have too much of that around. Not when Lydia is the center of your attention! Of course Mickey and Minnie were and still are her favorite Disney characters. Granny and her had a game that they called pink ball blue ball. They would spend hours playing together at Wayne and Lisa’s house. Granny and Princess Lilly played kick the ball down the hallway and Lilly would laugh and giggle when the ball hit the wall or ceiling. Um, Granny, I thought you weren’t supposed to kick balls in the house. Hmmm!
Lydia loves spending time with her family. One of her favorite people on the planet is her cousin Julie. According to Granny, Lydia thinks that Julie “hung the moon!” I take that to mean that she has her cousin Julie way up high on her list of favorite people. Lydia loved her early childhood walks with her cousin and Granny. She hadn’t started walking yet, and so she would kick back in her stroller enjoying the ride with her feet on the tray. These are the kinds of things that grannies remember and cherish their entire lives. As Lydia learned to walk, she was constantly on the go! She loved Moon the cat! Poor Moon recently went the way of feline but when she was still with us Lilly would often ask for Moon Moon!
Lisa says that she would find Moon and bring her to Lydia for a few minutes of torture after which Moon would run off until the next time. That sounds so familiar to me for some reason.
Lydia’s laugh is infectious and that is one of the many things that her family loves about her. That laugh and all the giggling! You could only imagine that all this activity would tucker Granny out and she would just be exhausted. As she put Lilly to bed and tried to get there herself, their princess would get a burst of energy. That’s where Papaw would come in. Lisa said that Papaw Wayne would stay with the two of them tickling Lilly for at least an hour. As she was tickled by her Papaw she would kick him and he would pretend to be hurt and act like he was going to toss her off of the bed. That would finally wear her out and then it was time for bed! Whew!
There is nothing as treasured as the purity and innocence of a young child. The memories of that stage of life never go away. They are only built upon by the memories that are formed as a result of watching your child grow into adulthood. All while enjoying all the various stages of growth. Are you able to get a picture of what this little person means to this family? I bet that you are. After all, we have all experienced the joy of having little people in our midst. Watching all the adorable things that they do. The questions that they ask, the giggles and innocent laughter are all things that are treasured for all of time. Alicia, or Ally as her friends call her, was and is an independent person. As such, her and Lydia would live outside the home while Ally worked at establishing herself in a career. They would, however always spend time at Granny and Papaw’s house.
To say that Ally loves her daughter is an understatement. The dreams that she had for her young daughter were without limit. Starting out as a single parent is indeed a challenge, but with the moral support of a loving family, that can most always be overcome. Getting to know Ally, I have come to realize that there are not too many things that she wouldn’t be able to accomplish. This because of her level of motivation and drive. She seems like a very intelligent and articulate individual. She is someone that could meet the challenges that lay ahead and there is no reason that the dreams that she had for Lilly could not be realized. Whether single or married one day, Ally could visualize Lilly achieving all the things that lay in wait for her. Grammar school through High School and into college. Sports, or Cheerleading, High School dances and Prom Night. What parent who loves their child wouldn’t be thinking ahead at least just a little bit? As time would continue, however, events would take place that would be a cause for real concern with Lilly. This would change everything for Ally and her family.
As early as one and a half years old Ally saw things in her daughter that may have been precursors to a disease that at the time she knew nothing about. Little Lydia was having sleep issues. She was waking early and staying awake until very late on many occasions. Ally said that she would often wake up crying and would be inconsolable. She went on to say that it seemed liked Lydia’s whole body would stiffen if she was touched. This made her wonder if her daughter was in pain. Ally was also noticing things in relationship to Lydia’s speech. She could not pronounce several letters or speak in sentences with over three or four words back to back. When Ally brought it up to the pediatrician, she was told that this was normal and not to worry about it because Lydia was meeting her other milestones. Gradually her speech improved but this, however, would not be the end of it.
Ally remembers that it was on May 22, 2015 that Lydia had her first Grand Mal seizure. This an hour after she sent her to daycare on the day care bus. She would of course take Lydia to the hospital but was advised that one seizure does not mean that she would have another. This however, was not to be the case. Lydia would have her second Grand Mal on June the 1st of 2015. Epilepsy was the early diagnoses after testing was performed. The drug Keppra was prescribed for Lydia but it was not effective. Even with the maximum dosage, Lydia was having one Grand Mal seizure per month. Alicia stated that by August of the same year Lydia had developed noticeable, uncontrollable movements, stuttering of speech, plus sudden and complete muscle loss. The Grand Mal seizures would continue through December. Lydia began to develop abnormal movements and was falling frequently. Ally stated that at the time, she had no idea what was going on and neither did the Neurologists. Was it a side effect from medication or a new type of seizure? Ally had not yet received the actual diagnosis for her daughter and was going under the assumption that Lydia had Epilepsy. She looked at what the side effects are for the current medication and compared them to what she was seeing in Lydia. She felt that she may have the answer. The procedure for handling seizure disorders in general is to add more and or different medications until the seizures are under control. Topamax in capsule form was tried next. The doctor recommended that the powder be sprinkled on Lydia’s food even though Ally explained that her daughter was having issues with speaking, swallowing, and eating in general. This not to mention that the medication would not dissolve on the food. Lydia was receiving next to none of the medication.
Nothing was working for relieving little Lydia’s of her seizures. According to Ally, Lydia continued to have movements that were out of control and dangerous. She would have a body part jerking quickly every three to five minutes or she was dropping to the ground. Is there any way that we could possibly imagine what it was like for this young mother at that point in time? What about sweet Lydia? What was all of this like for her? What was the damage she was seeing in her daughter as a result of all the seizures. She said that eventually, things would build up until Lydia had another Grand Mal seizure. The totality of what all this was doing to Lydia was so disturbing to this momma. In her own words, “She was bruised, scraped, and cut up by now, but the hit her spirit took from constant physical limitations, her own little person minded misunderstandings of her condition, and mistreatment she received by less than par local daycares is what I saw hurt her the most. My happy child thought her seizures were people she cared about pushing her down, and she made it clear she felt this way, and that her feelings were hurt worse than the trauma her body was experiencing.”
I can only imagine the concern that Ally had for her daughter at that point. What about Granny, Pappaw, and the rest of the family? This little person had become such an integral part of the family and the center of their world. This little person brought so much joy to their home and now all of a sudden her health had declined and things were out of control. They did not have answers for what was going on. Ally’s own anxiety was growing to the point that she reached out for help. The trauma all of this was creating was startling:
“I pleaded for help, because Lydia was beginning to be covered in bruises and the daycare was not comfortable with what she was going through either. She was losing coordination, sleep, and the ability to even walk without dropping flat on the ground. She still suffered one grand mal a month. She seemed to have no control over her body anymore. She had potty accidents, when before she began having seizures she was potty trained. I needed help for Lydia because nothing was working. We rode public transportation for two years. Even though she used to walk up the bus steps and wave to the driver, and even sing her abc's on the bus, she was now at the point where she couldn't walk without holding my hand. She was too tired to sing, and was weary from falling down all the time.” It would soon be determined that sweet little Lydia was experiencing Myoclonic, Drop, and Absence seizures. She would at one point have been through several different medications in the search of relief and eventually she would be on a cocktail of medications.
Alicia had seen enough and needed answers. Obviously, there was more going on than just Epilepsy and she had reached her limit. She commented in an email what she was feeling at the time, ”I repeatedly and frantically called the neurologist til we were scheduled to go to Vanderbilt on October 22nd, 2015 for a better understanding of Lydia's sudden change in movements.” It was on that day that little Lydia was checked into Monroe’s Children’s Hospital for a two to three day video EEG. Ally stated that Lydia had to stay in the hospital long enough for the Neurologists to determine what kind of seizure activity she was experiencing. This would also allow time needed to perform any other testing that would help them determine the root cause of the seizures.
In the course of trying to determine what was going on with Lydia it was thought that she may have what is called Doose Syndrome. Doose Syndrome is also known as Myoclonic Astatic Epilepsy. This syndrome affects people in their early childhood and the disorder is characterized by difficult to control generalized seizures. The types of seizures that Lydia was experiencing, i.e., Drop and Absence seizures, are included in that category. Ally described her feelings concerning that possibility, as well as, learning what was causing the abnormal movements seen in her daughter, “...my heart broke again that day when reading about Doose, and learning that her abnormal movements were due to myoclonic, drop, and absence seizures that had begun to be noticeable after her 2nd grand mal in June.” Doose would eventually be ruled out much to Ally’s relief, however the results of the EEG were revealing. According to Ally, Lydia's test showed seizure activity all over her brain. It even included nocturnal seizure activity. She would describe it in such a way as to say that her daughter’s brain was like a storm. The drug Depakote was added and other medication adjustments were made. This helped for almost two months. The seizures were under control and the abnormal movements had stopped. Alicia was concerned about the side effects of all the medications that Lydia was on at this point, but she had to have been somewhat satisfied by the improvements she was seeing. This however, was temporary.
Two weeks before Christmas, the seizures would return. This time however, they returned twice as bad. Whatever this monster was, it was relentless. Can you imagine what this family was experiencing during this holiday season? The level of anxiety that was being experienced by Ally? Ally said that further testing was declined by the insurance company for, quote, “lack of importance”. The only option that was made available was to add another medication, one that is named Onfi. Again, Ally not only had the concern for what the seizures were doing to her daughter’s health. She was also concerned about the effects that the cocktail of pharmaceuticals was having on her daughter’s little 37 pound body. This is what Ally had to say, “…she suffered another grand mal, and I watched all four seizure types return. My little girl was back on the floor after getting knocked down again by another drop seizure.” Can you imagine what this family was experiencing during this holiday season? The level of anxiety that was being experienced by Ally?
Alicia said that it was at that point, while being agitated and frantic, that she requested more testing. She went on to say that Lydia had labs taken for genetic testing. Tests that would look for any mutations that may be causing all the seizures. Fearfully, she had no idea what was happening to Lydia. Around the time that the results were to be given, Ally received a letter from the insurance company. Payment for the testing was declined. What? Words like “experimental” and phrases such as “not helpful to assist in her treatment” were used. Wasn’t she going through enough at that point? To have that come from the insurance company at that time seems so cold and inhumane. She said that she was floored by the wording in the letter. Who could not understand how she must have felt at that time? More phone calls were made and it was determined that they would return to Nashville to have genetic tests that the hospital’s program would pay for. The geneRx test was performed, however they would have to wait three months to receive the results.
While waiting for the results, Lydia was regressing. She began to wear a helmet for her safety and she had to wear pull-ups due to accidents. Ally kept Lydia close by her side for fear of her getting hurt while having a seizure. Her speech was slurred and she was stuttering. She no longer sang songs and was barely able to use a spoon to feed herself. Lydia was Ally’s baby girl. Her reason, and the center of her world. The months that it was taking to get a diagnosis had to have been so difficult. To witness the regression was more than what most any person her age would normally encounter. Ally would spend many nights awake due to Lydia’s broken sleeping patterns. She would observe her daughter, watching her body shake and her eyes flutter. Her words concerning those occurrences are so moving to me as I try to visualize those moments in the hours of the night. Her and Lydia together. She commented on little Lydia as she would awaken, “In the mornings, her body was shaky and unstable, but she continued smiling and trying to communicate, and I kept up hope that the test would give us answers and she would eventually be ok. We went to meetings to develop an IEP, for which she did qualify for, and we tried to adjust to all the changes happening all at once, it seemed.” I am heartbroken by this comment as I know what would soon lie ahead for this young momma and her baby girl. For her entire family for that matter.
I have been doing these stories for close to a year now and I have been moved by each individual one. Each story conveys the feelings that are experienced by the families as the diagnoses is found out. Almost all of them express what is the depth of despondency, grief, and sometimes rage that is felt by the parents and family. When you love someone as much as this mom and her family loves their Lydia, their princess Lilly, the emotions displayed are completely understood. These are Alicia’s own words which are honest and telling:
“April 16, 2016. Vanderbilt called and explained they did find a genetic mutation, and we would need to see our local neurologist for the test results. After my insisting, I learned the mutation was in the Cln2 Gene. Both copies were mutated. The TPP1 enzyme was not being produced. I researched and found Batten Disease, CLN2-Late Infantile. I read the words NO CURE, NOT ENOUGH FUNDING FOR RESEARCH, CHILDHOOD DEMENTIA and EARLY DEATH.That was the day I will never forget because the world stood still. My heart and soul was forever changed and so damaged, and Lydia had no idea what I had just learned. I couldn't face her for hours. I told my family and I watched my strong Dad cry, and my mother broke down, and every day after was the same. I quit my job. I was cracking and so broken. I isolated as much as possible. I felt forsaken by God. I cursed him while standing in my kitchen many days with my fists raised to him.”
You know what? God understands the anger! This story doesn’t end here. No not even close. Like the other stories, the parent is overwhelmed with the news that brings devastation and hopelessness. Things then change. I don’t think it is that the feelings of brokenness go away. It is just that added to that comes feelings of resolve towards helping their child battle the monster that is Battens. Ahead are so many sweet memories that come along with the challenges. Such was the case with Ally. Sometimes, it is just time to take action because of love. I don’t mean to wear the phrase out, but “undying love” comes to mind. I have now seen it displayed so often!
This quote was taken from an email that was sent soon after the diagnosis. “Even with such a grim diagnosis we have much to do. She's being referred to have leg braces fitted, Speech, PT, OT therapy, and vision testing. She's already passed her hearing test. I requested a geneticist, and am waiting for them to fit us in.” This young Momma jumped to action out of love for princess Lilly and it is why this young lady has my respect.
Batten Disease is a battle. Just ask the parents. Ally continued to care for her Lydia after receiving the diagnoses. The symptoms that the disease brings to little Lydia are a constant challenge to this mommy and her baby girl. Little Lydia, or Princess Lilly, continues to face the daily struggles with a smile on her little face. She is just so precious to this old blogger!
Lilly would go through spells of crying and yelling, sometimes at a level that was deafening and with her hands clenched. She would go through cycles. Three or four good days and then bad days that lasted about the same amount of time. Emotions would run from high to low for both mommy and her little girl as Lydia would sometimes be inconsolable. Even so, Lydia continued to laugh and display that smile that is just SO darling. Even now, she gives everything that she has to give. Each and everyday. This is testified to by Ally’s comment concerning the character qualities that she sees in her little princess, “Lydia's stubbornness and free spirited nature are beautiful qualities to possess, and most importantly it'll help her to continue to fight. it'll help me continue to fight with and for her.”
The disappointment in this young mom over what has happened is difficult to overlook. She has felt that their entire lives have been ruined by Batten Disease. Her dreams of Lydia becoming a productive member of society have been undermined and achieving the things she had dreamed of for Lydia are in all likelihood never to come about. The following quote is something that sounds so familiar. I had heard the same type of thing come from Sands Macphail when I had blogged about her daughter Caitlind. This concerning the loss that Sands knew would come with her own daughter. Similarly, this is what Ally had to say, “I grieved her losses before they even happened. I grieved the loss of her before she was even gone. I had no idea what my purpose was in life other than to be a mother, Lydia's mom, and now I had no reason to live if she wasn't with me. Still, she needed me and I had to pull myself out of death's grip, to keep fighting for her til the end.” How very brave! This is why I hate Batten Disease but love the families and their little warriors. Just think about it for a minute!
In her search for help with her daughter, Ally found out about an experimental drug trial while on Clinical trials.gov. This, she felt, was their “last hope”. All the while she was witnessing her daughter’s continued decline. Lydia’s variant of Batten Disease is the only one for which this treatment is available. Ally would, of course, apply for the program. In July of 2016, Ally and Lydia would attend the Batten Disease conference that is put on each year by the Batten Disease Support and Research Association (BDSRA). While there, she had the opportunity to talk to representatives from BioMarine. That is the company that supplies the drug that is used in the treatment. A week after the conference Lydia had lost her ability to walk. She hadn’t eaten for a week and wasn’t moving around. This all led Ally to write an impassioned email to the reps at BioMarine. The email was a plea for help. It seemed at the time that she did not have hopes of Lydia being accepted for the next trial that was coming up. Among other things in her plea for help, she talked about Lydia and the other children at the conference, “ I looked into these beautiful children's eyes at the conference in St. Louis and they are the most beautiful children I've ever met. Even the ones who have declined so much are so full of life and smiles. That's my Lydia, too. She was an energizer bunny. Always running, always smiling, and always socializing. She is slowly fading from me. Her adventurous, daring, and free spirit is barely noticeable these days. She's taken to sitting around when she used to run from the time her feet touched the floor in the morning. To think I used to complain about how tiring it was chasing after her. Now I don't have to chase her, and I'm even more tired. I am mentally and physically exhausted from watching her suffer.” That is just a small portion of what I read.
This impassioned mommy said that she felt out of her mind and had written to BioMarine out of anger. In response she received an opportunity to conference over the phone with a couple of the reps from the company. Ally told me that their response to her was compassionate and sweet. How very wonderful is that? A week before Lydia’s 5th Birthday, they received a call stating that the extended trial was open to five children who had CLN2 Batten Disease. They wanted Ally to bring Lydia up to Ohio so that she could be seen by staff members. On August the 29th, two days after her 5th birthday, they were in Ohio getting an eval to see if Lydia qualified. They found out that day that she did and a week later, the shunt was implanted. Two weeks after that, in September of 2016, Lydia had her first infusion.
“Looking back now, and after hearing other rare disease stories from amazing parents, I learned that we had/have more to be thankful for that I didn't even notice!” This from Alicia, better known to her friends as Ally. She is thankful that Lydia’s diagnoses came relatively soon compared to others. Her little warrior princess is in a clinical trial that is available only to kids with CLN2 and along the way she is meeting some very wonderful people.
“Batten's Disease is an absolute living nightmare. It is hell, and it doesn't discriminate against anyone from anywhere. The only good thing about Battens is the people we have met in the same situation and have become long distance family to. This includes the wonderful therapists who actually have passion for their career, and the compassionate Batten's disease specialist and her pro-active staff in Ohio. The uplifting support of the Batten's Disease Research Association, also in Ohio. They have made their presence known from the very beginning, and it is such a light in our darkness.” In fact she refers to some of the people that they have gone on to meet as lifelines. That is in fact, literally true!
This story is still being written. I was chatting with Ally one day in Instant Messenger and I told her that what she was doing for her daughter was wonderful. She is separated by the miles from her family in Tennessee and is by and large alone with her daughter. Yes, I am sure that they have made friends along the way. I know that the people at BDRSA have been a tremendous help and support to her. Her response to me concerning their being in Ohio and undergoing the treatment is that it was not going to save her daughter. That is in all likelihood the truth. We need an actual cure and our hope is that one would be found. You see though, that is what makes the story all the more sweet. This mommy will do anything to help improve her daughter’s quality of life. Anything to relieve her of the symptoms and progression of the disease. If you had seen the amount of information that I had to work with for this blog. If you had seen all of it’s content. You would have the same amount of respect and appreciation for Ally that I do. She is an amazing young lady! I wish them all the best. Granny and Papaw too!
Like the rest of us, Princess Lilly is here for a time. Hopefully a very long time to come! She will impact the lives of this family like none other. She will teach people how to love more deeply. How to surrender and sacrifice. How to show Undying Love! The things that she and others like her teach us will be hopefully passed on to those with whom we make contact. The lessons learned should be passed on. Yes, there will be heartbreak along the way but the memories that are formed will be so sweet that they should carry this mommy and her family through the difficult days. Let that be the case! Ally said that anyone would have done what she is doing. What would you have done? When most young women are shaping their careers or finding true love, Ally has another agenda. Her priorities surround the health and welfare of her daughter. While she says that anybody would do what she has done, I can’t help but to be completely impressed by her.
Dear Lydia, you are so precious. Our heart's desire is that you continue to fight this monster for a long time to come. We want a cure for Batten Disease. Our prayer is that the treatments that you are receiving help to keep you whole. What we hope and pray for more than anything is that a cure is found for all of the approximately 13 to 14 variants of Batten Disease. Until that time there is love that is unparalleled. Lydia, you are so loved. By your mommy, Papaw, and Granny too. I am sure by your entire family and many others for that matter. You know what Lydia? I love you too!
Lydia, I love you!
Blogger and Advocate
I HAVE TO TELL YOU:
What I have to tell you is how completely impressed that I am with Lydia's mom, Alicia Headrick. I was very challenged by doing this particular article because of the volume of information that she provided me. Right from the start, I could see that she is a very intelligent and articulate young lady. Being a single mother away from home combined with being a mom to a daughter that has Batten Disease provides her with a most difficult challenge. It doesn't matter what your financial situation is, married or single. Having a child like Lydia is expensive. A lot of families are able to do fund raisers to help pay for expenses. Ally though, is Lydia's caretaker 24/7 and she doesn't have the time. I don't always ask that people give of their resources in support of a Batten family but in this case I will. Alicia is a very responsible person and will use everything given in the help of her daughter very dilligently. So what I am asking is that people look at the link to her gofundme account that I am providing. Please consider helping. Thanks so much!!
Is it them or is it us? Is it the feelings that they produce in us or is it that there is something truly special about them? I think that the answer has to be all of the above. It is them, but they also do something to us. Once you give a little piece of your heart to these kids and their families, they come close to taking all of it. Let it happen!
I would like to welcome to my blog Sanfilippo families, as well as, families in other MPS communities. I am grateful for every opportunity to write about those who battle an MPS disorder. This, of course, alongside their special children. This is a labor of love that is extended to each one of you! Scroll down to see MPS family titles.
Highlighting a previous blog that might interest you:
Forever Royal - The Final Version
One child in a family with a rare disease is a challenge. What if there is two? Heartbreak multiplied you pick up the cause and do your very best to make a difference. That is how a normal family becomes Forever Royal ...
Take the titles listed below and go to month and year listed in the archives.
January 2017 -
*The Story Between The Lines
February 2017 -
*I Know Just Where You Are
*My Kind Of Royalty
March 2017 -
*The Caring Type
*Face to face: A Fairy-tale
April 2017 -
*No Ordinary Love
*A Rare Friendship
May 2017 -
*Tyrell and The Rare Love Story
June 2017 -
*Seth and The Healing
July 2017 -
*Little John and The Reason
*Sands and The Scottish Princess
August 2017 -
*A Rare Kind of Devotion
*The Giggle Box
September 2017 -
*Sweet Montanna and The Status
October 2017 -
*The Blog About My Blog
November 2017 -
*Lydia, I Love You!
*Kayden And The Change In Plans
December 2017 -
*Those That Are Like Them
January 2018 -
*Nora Skye - I Know Just Where You Are
*Brock and The Priceless Memories
*Jamesy Boy and The Treatment
*The Priceless Princess From Beyond
*Forever Royal - Part One
*Forever Royal - Part Two
*That Kind of Love - Conner's Story
*What I See (She is a Butterfly)
*No Longer Alone - Kristiina's Story
*Things We've Talked About - Oscar's Story
*The Reason Why - Hannah's Story
*Kayla's Perfect Princess - Breanna's Story
*Where Do I Go From Here? - An information only blog
*Warriors Unaware - Mia and Kaleb
*Her Little Story
*Someone Like Raelynn
*Forever Royal - The Final Version
*Awfully Beautiful - The Life of Noah and Laine
*A Lifetime of Love - Tegen's Destiny
*Forever Beautiful - Gabi's Story
*The Miracle Baby - Amelia's Story
*Dylan's Life - A Small Town Story
*Princess Grace and the Challenges
*Anything for Tessa - Her Story
*Haley Bug's Battle - A Family Story
Sanfilippo Syndrome and other MPS family titles -
*The Beautiful Light of Haidyn Grace
*Any Distance Traveled - Reagan's Story
*The Missing Someone - Kiernan's Story
Archives - Use title listed above with the applicable month and year.
Highlights from the beginning of gregster60.com -
Benjamin's Daddy - March and June of 2016 - Revised May 2017. Titled Benjamin's Daddy Revised.
My Fearless Adventure - April and May of 2016
A Different Type of Warrior - January 2017
Larry - February 2017