¨Good days, bad days. You know the story. Probably like most of us Batten parents. My children are my world and I felt it was falling apart, but I picked myself up and just got on with things. I tried to make life as good as we could for both the kids, but it wasn't easy.¨
Caitlind's Mum and Advocate
I sometimes have felt that when it came to planning a family my wife and I didn't do too good of a job. We already had two boys and we didn’t have a huge income. As usual, I was supporting my family on my own but we decided that we wanted to try for a girl. I sometimes tell people that we wanted a girl but got a Benjamin instead. We were young and never gave it a thought that it was likely that we would be parents to a special needs child. Our first two boys were born normal and healthy for the most part. We didn’t take into consideration that my wife had a known genetic disorder that ran in her biological family. She was adopted. And so, we received our special gift. Unlike a child with Batten Disease Benjamin did not reach all his early milestones. It did not come as a surprise that we had this challenge. We just didn’t know everything that it would entail. Trips to the doctor. Lots of phone calls. Seizures and medication changes. Medical equipment and braces for his legs early on. There have been challenges, yes. But you know what. We absolutely love the guy and we have no regrets. Not one! Along with the challenges, he has brought with him a constant source of joy. He is still very childlike in so many ways and he is such a teddy bear!
Things are different for a parent of a child with Batten or another rare and fatal disease. In their case, they are taken completely by surprise. As the child begins their life, the parents have no idea what will befall their son or daughter. The plans that they had are all at once change with the news that their child has a disease that they most often didn't even know exists.
Such is the case in this next story. This story takes place in Scotland. In Livingston, West Lothian to be exact. West Lothian is one of the historic counties within Scotland. This beautiful place has within it a mixture of old world charm and modern day culture. Once dominated by shale oil mining, Livingston is now the hub for much of the high technology and pharmaceutical industry in Scotland. Many of the pictures that I see include lots of green lawn and attractive architecture. Looks like a wonderful place to live. I am sure that with all the history that surrounds this place, there are many stories that could be told.
One of my most favorite names on Facebook is that of Sands Macphail. What I am about to write is part of her’s and her family’s story as it relates to Batten disease.
Colin and Sandra Macphail had a plan for a family. They wanted two children. Both felt that was a prudent number of kids for them because they could better provide for that number. Who could argue with that? They would go on to have two girls. Sometimes one gender or the other runs predominate in families. My wife’s sister Laurie and her husband Randy have three girls. I can recall Randy saying that he would have given anything for a son. That is except for one of his daughters! I wonder if Colin had thought along those lines? I know that he loves his daughters so very much. And Sands? Well I have often thought that there is nothing like a mother’s love. Even more so, there is no bond that exists like that which is between a mother and a daughter!
Caitlind Macphail was born on November the 17th of the year 1991. Sands gave birth to her baby girl at John’s Hospital in Livingston, West Lothian. Like all beautiful babies, Caitlind was so perfect in every way. She had all her little fingers and toes and, you guessed it. She came brand new to the showroom floor complete with that new baby smell. She would soon join her big sister Jade at the Macphail house and their family would be complete. Mom and Dad were so happy. Both of their daughters were beautiful and their world would begin to revolve around them. A huge part of their purpose in life was raising those two girls into adulthood. Although there was no way that Colin and Sands could see everything that lay ahead of them, they had a general idea of how they would want things to turn out. Success, good health, and prosperity for both of their girls. A little bit of rain must fall, as they say, into everyone's life. However, the Macphails had no idea how much rain that would include. Caitlind had every appearance of being a normal child. Sands would tell me that while Caitlind was not academically gifted, she had her way of showing people that she was bright and intelligent. Typical of a lot of kids, Caitlind’s room was often a little messy but she knew exactly where everything was. Her parents referred to her space as “Organized Chaos”. As Sands would tell me, Caitlind was good at reading pictures and knowing which DVDs were which. Sands would send her for a specific hair bobble and little Caitlind would know exactly which one was which. She was funny and sassy too. I take that to mean that Caitlind had a little bit of a cute and spunky attitude to her. The MacPhails had noticed that Caitlind’s eyesight was not the best but that didn’t deter them from placing her in the mainstream school system. Sands would tell me that they were a bit hesitant to send Caitlind at an early age but felt it was because she was their baby. So at the tender age of four, Caitlind started attending preschool and then early elementary. Caitlind’s older sister Jade had started school from an even earlier age and according to Sands, Jade had coped with school well from day one. Who would think anything other than that Caitlind would do just as well? In fact, Caitlind would do well as she began her early education and would continue to fit in well with many of her peers. Everything seemed to be falling into place for this family of four.
Colin and Sands would have to make the usual types of decisions that parents normally have to make for their child. Then things would begin to become more complicated. Caitlind’s peers began to outgrow her in academic and social development. Caitlind was their baby and they were beginning to become concerned about her. The Macphails believed at the time that Caitlind was perhaps dyslexic. Having the family that they planned meant everything to them and there was nothing that Sands would not do for her little girl. Sands wanted to have Caitlind tested, however she was only five years old at the time. Normally, children in the UK are not tested until they turn seven. This was not acceptable to Sands and so after a lengthy fight, Caitlind was tested. It was found that she did have some dyslexic tendencies, however the testing would tell them that her problems were across the board. As a result, the education board decided that Caitlind did not have dyslexia. Sands explained to me that as Caitlind turned seven, she was still fighting for her as her problems were getting worse. Another concern that continued to be an issue was Caitlind’s eyesight. Sands would address this by taking her to an optician. She mentioned to the doctor that she thought that her daughter was dyslexic. With this the doctor gave her a full test and then referred Caitlind to a hospital that has vision problems as a specialty. The trip to the hospital would prove to be the unraveling of the Macphail’s world as they knew it. It was there that little Caitlind, now seven years old, would receive the diagnoses of Rod Cone Dystrophy. Rod Cone Dystrophy is the name given to a wide range of eye conditions. All of these conditions are linked to problems with the rod and cone photo-receptors. The photo-receptors either do not work when a child is born or else they stop working over a period of time. This disease most often leads to blindness.
The news of the diagnosis was devastating to Colin and Sands. This, after all, could cause Caitlind to go blind. The Macphails thought that perhaps that was the reason that Caitlind was having problems with her education. Caitlind would go for regular check ups for her eyesight at the hospital. She also sat closer to the teacher and received extra help. None of this, however, seemed to help and the family’s frustration and concern continued to grow. The stories that I know of and have written about often include accounts of misdiagnoses. It seems that doctors will usually place on a child a diagnosis that seems obvious to them. Perhaps this is understandable as Battens is rare. Sometimes, it seems that more could be done by a physician. More energy could be expended. Without all the symptoms showing at this point in Caitlind, Rod Cone Dystrophy must have seemed to be the proper diagnoses.
At nine years of age Caitlind had her first seizure. Can you imagine what things must have been like for Colin and Sands at that point? How was all the extra attention needed affecting Caitlind’s older sister Jade? Sands would tell me that it was at this point that her world would continue to fall apart! First Caitlind was having problems socially and academically, being passed up by her peers. She showed signs of being dyslexic but was not receiving a diagnosis as such. Then she had problems with her eyesight and received a diagnosis for a disease that would most likely leave her blind. And then, seizures. The confusion and heartache that must have surrounded the family at this point. Sands asked the doctor if the seizures were related to her eye problems and he assured her that they were not. According to Sands, it seemed that Caitlind’s seizures would continue until she was placed on a medication called Epilim.
Eventually Colin and Sands felt that they were making progress with Caitlind’s situation and so they refocused their attention on her education. Caitlind was becoming more and more isolated at school as her peers were all continuing to grow into maturity. Things were different for Caitlind. According to Sands, for her “time stood still where maturity was concerned”. And so the Macphails decided to get the ball rolling to place Caitlind into a more suitable school. At this time Caitlind was in the 4th grade and something needed to be done. The Macphails would pay a visit to the Royal Blind School in Edinburgh. Edinburgh is in a different region and this caused Sands to be concerned that Caitlind would not be able to attend. In fact, they were refused a place at the school. When it came to both her children, Sands was a fighter. She would not take no for an answer. She consulted with a Doctor Valentine in Livingston. According to Sands, he was a fabulous Doctor. At this point, the Macphails still did not know what Batten disease was but as Sands would put it, “That was only just around the next corner”. The family would next receive a phone call from a doctor at St. John’s hospital. He stated that the school doctor wanted Caitlind tested for Batten disease. Sands took Caitlind to the children’s hospital in Edinburgh for the tests which included a rectal biopsy. They had to wait several weeks to receive the results. I wonder what was going through their minds during that time? After all they had already been through only to sit and wait for the results of this testing. Sitting and waiting to see if Caitlind had this awful disease. Sands still remembers the date that they received the results of the testing. It was on the 26th of August in 2002 that they received the all clear. They were told that Caitlind did not have Batten disease. They were excited about the news to the point that they shared it with friends and family. They knew that something still wasn’t right but they gave themselves a mental break. They believed from the news they received, that Caitlind did not have Batten disease. Life would continue on for the Macphail family.
The next thing Sands knew, it was early December and Caitlind’s next appointment was approaching. Her regular physician, Dr. Valentine, was not available so she was seen by a Doctor Sha. The Macphails thought that this would be a routine appointment related to the seizures and Colin attended this one on his own with Caitlind. It was during this appointment that Dr. Sha proceeded to ask Colin how the family was coping with Caitlind having Batten disease? Colin informed the doctor that they had a letter stating that the test results had come back negative. The doctor, though, had a letter saying that Caitlind’s blood tests had come back positive. She in fact had Juvenile Batten Disease, CLN3. Caitlind had five different tests performed on her and four of them had come back negative. The blood test is the one that would reveal the truth. Princess Caitlind had Battens but for some reason the news of the results from the blood test had not reached the Macphails. And so it took from the date of the letter they received in August until the appointment in December for the family to receive the confirmation. Can you imagine? This is often the type of thing families face when it comes to Batten disease. Sands would tell me that as she got home, Caitlind and Jade were upstairs playing and Colin was downstairs in the sitting room. Understandably, he had been overcome with emotion. Wouldn’t you have been also? Not knowing what was happening, Sands contacted Dr. Valentine. He confirmed that the blood test was in fact positive for CLN3, Juvenile Batten disease. The doctor would look for answers as to why all the other testing had come back negative.
This all took place five days before Christmas. The season that is normally reserved for peace and good tidings brought with it news that would completely rock the Macphails world. Their beautiful daughter had a fatal disease. As Sands would put it, “This was one of out worst Christmases ever. We were all devastated. Once again our world was to come crashing down and to be honest it's never been fully rebuilt.” Depression and anxiety would become part of their life at that point. I have to believe that this is common among those families that deal with similar circumstances. Who could argue that this type of news would be devastating to any parent. I think that the Macphails must have been like so many other parents facing this situation. Faced with the news that Caitlind had Batten disease, they were initially devastated. Then, they asked themselves. What next? How can I care for my child in the best possible way? In fact Sands had this to say, “When we were given the diagnosis both Colin and I sank into depression. We were walking about like zombies. Both of us were grieving for a child that was still with us, and who was to be with us for a considerable amount of time.”
This is not to say that life would just go on for Colin and Sands. In fact Sands would share with me that the entire incident of her baby becoming a Batten warrior would cause her to develop clinical depression. She still deals with it to this day. They, however, did then and still do now put one foot in front of the other each and every day. I am sure that other Batten parents can relate to this type of thing. Caitlind would be accepted into the Royal Blind School after being denied access initially by the local council. They wanted her educated in her local area within West Lothian, however Sands fought for her daughter’s placement. Caitlind would do very well at the school and it was apparent that it was an excellent fit for her. She made many friends, the best of which was named Alana. The school catered to her needs and there were only four students in her class. She was getting the attention that she needed. Her teachers were and still are fantastic. In fact, some of them still keep in touch with the Macphails. In addition, Caitlind would go on to attend a social group called RNIB. It was led by a lady named Jane Coates. Caitlind absolutely loved this group and, according to Sands, she attended for a good few years. She felt like she belonged. Sands volunteered while Caitlind was attending.
So there were some positives in the midst of very trying struggles that came with Juvenile Battens. I can only imagine from a great distance, the ever deepening bond that was created between Sands and Caitlind. A mother and her daughter. Not only a daughter, but one in great need of help. Knowing what may lay ahead of them as a family, and yet trying to maintain as normal of a lifestyle as they could. The extra time, commitment, and activity, all while providing for the physical needs of a family.
The years would go by without a lot of changes. When Caitlind first started attending her new school she was walking and talking. Sands would tell me, half jokingly, that Caitlind was eating them out of house and home although for some reason she did not take in fluids very well. And then, one day, sweet Caitlind got out of bed crying. Sands said that this went on for 18 months. “She would cry and scream from the minute she got out of bed until the minute she went back to bed.... it was awful for her, and to be honest, for us all.” According to Sands, Caitlind was never violent, but in her words the screaming was “soul destroying.” I can understand how that type of thing over the course of the day would be absolutely unnerving. This is how Sands would put it to me, “I'm a very patient person but sometimes I'd had enough so I'd go into my laundry room, close the door, scream myself, then go back to Caitlind. It was all I could do to stay sane.”
Then came the stage where Caitlind was having problems swallowing her medication. Sands said that it would take 3 to 4 hours at times. It was so frustrating for Sands that she would raise her voice to get her to swallow and then she would feel guilty for doing so. As she would say, “I knew it wasn't her fault, but I'm human and was at the end of my tether.” You know what dear lady? We understand! It was suggested to the Macphails that they have a Mickey button, also known as a feeding tube, inserted in Caitlind’s tummy while she was still in relatively good health. After giving it much thought, they decided that it was the best thing to do. The surgery was performed but poor Caitlind didn’t cope well with it and was placed in children’s hospice for about a week. This was so that her and her family could get some rest. Sands would tell me that they were able to stay at the hospice with their daughter and she remarked about what a wonderful place it was. She said that they were all like one big family while staying there with the others.
Along the way, there were fun times mixed with the stressful times. When Caitlind was eleven years old, the family brought her home a black Labrador dog. They thought that doing so would help her stay as mobile as possible for as long as possible. Like with most teenagers, that didn’t work, and the adults ended up walking the dog. It seems like it doesn’t matter what country you are from when it comes to things like that! The dog’s name was Chuckie. They also had a cat named Tommy. Both were named after characters in the Rugrats cartoon, which was Jade’s favorite. Yep, it doesn’t matter where you are from lol. Caitlind was about 15 years old when mobility started to become an issue for her.
Sands said that at times life moved quickly and at other times it dragged on. It would drag for them when they were in the hospital with Caitlind but any other time it sped by so fast. The journey that a family such as the Macphails takes is as none other.
I am drawn to these families because of what they face and what they have to endure. Knowing what the outcome will be and yet doing everything it takes to make life as happy and normal as they can for their child. All in hopes that there will one day be a cure. Sands fought for Caitlind anytime it was required. Colin and Sands showed their daughter the undying love that has been mentioned on a few occasions. Sands would describe Caitlind’s journey in a very succinct fashion, “Caitlind was such a happy little girl and she always stayed our little girl. After all, this illness took away her ability to grow up. She played with her dolls until she could physically play no more. Seizures put a stop to that.” She would tell me that one of the scariest times for them is when Caitlind had more than one seizure. She had over 40 seizure in about 3 hours. On this occasion Caitlind was taken directly to the resuscitation area of the hospital and the Macphails were allowed to go with her. They were told by the doctor that Caitlind may not make it, however Sands knew her baby girl! She told the doctor that Caitlind was not going anywhere. In fact, Caitlind did make it through. Sands told me that this particular doctor was kind of a grumpy guy. She said that it was a great feeling to tell him otherwise and to have it come to pass. Caitlind was in the hospital for ten days before going into the children’s hospice. Sands would stay with her the entire time as she had little trust in others when it came to Caitlind. On the other hand, Sands said that the hospice was an amazing place. Laughter does a person a world of good even in the most stressful of times. Sands had shared a couple of funny stories with me, one of which took place at this time. I'll put it to you in her words, “Because we went to the hospice in a bit of hurry, and with such a long time in the hospital, Colin had forgotten to pack his socks. So while we were at the hospice and Caitlind was resting well, we decided to go to the nearest town to get him some socks and some fresh air. Well can I say I'm not taking him shopping again. We came back with a new lazy boy suite, kitchen table and chairs, and rocking chairs for the garden. Oh, and yes we did get socks lol.” Do you know how they tell you that you should never go grocery shopping when you are hungry? Well I think that the moral to the Macphail’s story here is that you should never go shopping for socks when you are under a lot of stress.
When times are difficult good friends and family are there for you in the biggest way! Such was the case for Sands’ childhood friend, Kim Martin. Kim told me that her and Sands have known each other since they were about 15 years old and they see each other as family. When Sands needed help, Kim stepped up and became Caitlind’s caretaker. You can only imagine that a bond would develop between Kim and Caitlind and I know that such was the case. Kim would would help in Caitlind’s care for almost six years. She was a witness to the resilience of these Batten warriors and everything that they teach us. She also can testify to the type of care that that Colin and Sands had provided Caitlind. Kim said this in her words concerning sweet Caitlind and the Macphails, “She became non-verbal, yet we could still see her personality shine through in the way she laughed and smiled at the world around her. We all tried to do as much as possible with her, as we wanted her to experience as much life as she could. As I said, Sandra and I have been friends for years, and so seeing her, and her family, having to suffer such a great loss is difficult, however, I feel Caitlind couldn't have had a better, more supportive family and we are all lucky to have been blessed with such a genuinely lovely person, even if her time on this earth was over too soon.” Kim was not the only person at the Martin home that would sacrifice her time by giving special attention to Princess Caitlind. There were many occasions in which Kim's daughter Robyn would take time for her. Sand's would tell me that Robyn would spend time with Caitlind at the cinema or she would take her out bowling. This goes to show that family doesn't always share the same bloodline. I have heard it said over and over again. You never get over a loss such as the Macphail family has experienced. You only learn to move forward while living with a wound that never heals completely. I cannot say it enough when I tell you that I have the upmost respect and appreciation for Batten families. That certainly would include Colin, Sands, and big sister Jade. I believe that they can take comfort in the fact that their princess is in a much better place. She is free and experiencing great things. Caitlind also lives on in the sweet memories that she has provided her family and also the things that she taught them about life. Caitlind lives in their hearts and minds as well. She will always be part of the Macphail house and she will always be Sands’ baby girl. I have had it in mind for a long time now to have Princess Caitlind in my blog and I am so happy that she is. In that regard she will always be here as well for as long as this blog exists.
Things don’t always go according to our plans but we overcome as we do the best that we can! Awareness, funding, battle Batten, find a cure! Every one of these stories that I have written has had this kind of test that they go through. I call it the tear test. I feel that if I start to tear up, the story will most certainly touch other people. Trust me when I tell you that, up to this point, they all have passed the test. As with all the little Batten warriors that went before her, Caitlind gave life everything that she had. She fought bravely and in the process she left an indelible mark on everyone that was a part of her life. You know what? These kids have collectively left a mark on my life that will never be erased. I promise! Caitlind’s seizures became almost impossible to control. As her journey was nearing completion, medical staff had to sedate her and keep her on life support with a tube down her throat for four long weeks. Her condition deteriorated to the point that she did not make it. Sweet Caitlind became heaven’s gain on March the 31st of 2016. Sands again talked about her baby girl. She both talked about the disease and its effect, as well as, the impact that her daughter had on people. “Caitlind was walking before the first episode of seizures but by the time we got home she was never able to weight bare again. From then on it was hoist and wheelchairs all the way. This story sounds a bit harrowing at times, and yes it was at times, but the memories I have of Caitlind are amazing ones. She had such a wicked sense of humor. Nothing got Caitlind down for long. I've never known anyone as courageous as Caitlind, or as strong. She never asked why me, never! I asked why my baby so so often. We had some really great times. She would wind her sister up, but in a good way. Especially when she couldn't talk, her sense of humor shone through, right up to the end.”
There are many phrases that I have come up with, over time, to help describe these priceless warriors and the love that exists between them and their families. All throughout the battle, we see a type of resilience displayed by those who battle Batten disease. They continually go through series of setbacks but they usually bounce back and remain happy for as long as the disease permits. When it comes to the love that exists between them and their families, it is one that is undying and a bond that could never be broken is created. The bond never ceases to exist. You wouldn't want it to! These kids have such a profound impact on those that love and care for them. They change people's lives and their presence is felt long after they leave us for heaven. In that way, it's like they stay with us forever. They truly are the most special and the most amazing. They are the reason that I write and my life too, has been changed by them. Once you give a piece of your heart to those who battle, they come close to taking all of it. Caitlind is beautiful, for all of eternity. Thanks for taking the time to read a little bit about her and her family!
Blogger and Advocate
7/25/2017 09:55:47 pm
Love the stories you write of these unforgettable children! I'm a Pediatric Nurse and have only seen this disease in one of my patients. I have 2 sons with autism and it is challenging at times. These stories really put things into perspective for me. I couldn't imagine the pain and absolute devastation Batten Disease has on these families. My heart completely breaks for everyone! My prayers for all the families!
1/25/2021 10:55:23 am
Another beautiful story of a loving family who has gone through hell and high water to make the best of an awful situation.
1/25/2021 06:12:22 pm
Patricia, thank you so much for your kind words. They are truly appreciated. Greg
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