Raising For Rylee & Caden (MLD)
Our daughter, Rylee, was diagnosed with a terminal diseases called Metachromatic Leukodystrophy (MLD) on July 29th 2014 at the age of 6. Our Caden was then tested and confirmed to also have MLD on September 12th 2014 at the age of 5.
So far we have raised about $12,000 on this gofundme page which has been unbelievable and we are forever grateful for the help. All of these funds have gone towards the kids and their needs. A huge chunk of that money has gone towards helping us take both of our kids to Italy to see if they would qualify for a clinical trial called Gene therapy (our son did qualify and have the therapy but our daughter had regressed too much and did not qualify). Most of the remaining funds went towards helping us pay our bills while we were in Italy for roughly 5 months while our son was receiving treatment. Finally the last of the funds has gone Into our children's account and used for mostly medical expenses that were not covered insurance.
We are still asking for any type of financial assistance with expenses that come along with having two children with a terminal disease, but also help with being able to afford a bigger modified van that will safely fit both children in chairs as that seems to be the direction we are headed, and lastly we would like to start raising for future burial cost.
We are starting this now before it happens because we would like to have it all reserved and know all it taken care before the time comes. The last thing I want to do after my child or children pass is have to figure out how we will pray to lay one or both of them to rest. This will help take a large burden off both myself and their father. Again we are forever grateful for any and all help financially. We can't begin to explain how helpful this has been.
First, let me start off by describing our Rylee. Ever since she was tiny she was very attentive and excited to learn. She hit all of her milestones on time, if not early. Her favorite activities were puzzles, games, and anything educational. She loved to play with others, color and play with barbies. She was very happy and she was one of the top students in her Kinder class. In March of 2014 she started having wetting accidents, this was VERY unusual as she never had an accident since we was potty trained at 2. I immediately took her to the Dr. and all of the tests came back normal. They suggested that she was getting lazy and holding it too long. Shortly after, she started having bowel movement accidents and the doctors suggested she was constipated. Sometime in May I started noticing her attitude changing. She was emotional, fatigued, her writing which use to be clear and very neat was shaky and sloppy. She also started asking for help eating and getting dress. She use to do her homework assignments right away and looked forward to completing it, now she was barely able to get through a half a page. Her attention span and patience was short. She started talking loud and becoming irritable. She was having headaches and her walking became clumsy and she would fall often during walks. When we would play games, such as Candyland, she would forget the rules and what to do next. She had a hard time remembering and following simple instructions. In June I took her back to the Doctor and told them about these symptoms and that I felt like she was regressing. Her Doctor had her do some simple motor skills tests and suggested that we have blood work done and get her in for a MRI. At the end of July we were finally able to get them to set an appointment for her to have the MRI. We made the 3 hour drive to a hospital in Sacramento for her app. The Doctors said that they found some abnormalities and they would like us to be admitted into UC Davis Medical Center.
The next day the neurologist came in to talk to us and explained that Rylee had a disease called Leukodystrophy. I've never heard of this disease. She explained that there are over 40 different types of Leukodystrophy and that it is a brain disease that affects the myelin cells, which is the matter that protects the nerve cells. When this happens it slows the messages between the brain and the rest of the body. This leads to problems with speech, hearing, vision, all motor skills, and overall movement. Basically it shuts everything down and you lose the ability to eat, talk, move, hear, and see until it finally takes you completely. There is no cure, and treatment such as physical therapy or transplants only temporarily help but this is an aggressive, progressive disease. The neurologist suggested that Rylee have another MRI, blood work, and lumbar puncture (spinal tap) done and for us to talk to their genetic counselor, which we did while still admitted at Davis. Since then we've gone to see a specialist in Pittsburgh who helped confirm through bloodwork that the type of Leukodystrophy is Metachromatic. We were in PA for ten days, she underwent many different tests and we looked into the bone marrow transplant which is pretty much the only treatment they offer in the States. After talking to the drs, other mld families, and even meeting another family in PA whose daughter had the BMT, we choose not to go forward as we felt the quality of life wasn't necessarily there.
Because this disease is genetic (although we never knew it was in either of our families) we had our son tested as well. September of 2014 we were told that our son also had Mld and was pre symptomatic but expected to start having symptoms around his sixth birthday like his sister had. We had heard of a gene therapy clinical trial that was being done in Milan Italy and in October we were able to fly there to have both kids assessed and see if they would qualify to join the trial. We had heard a lot of positive things from other families and felt this was our children's best shot. While there because Caden was pre symptomatic he qualified easily, however we were told that Rylee did not qualify and that her IQ test was one point to low. At that time the first phase of the trial had just closed and they were expecting to start phase two shortly but they weren't certain when so we had to head home and wait for there call.
In December 2014 we received the call that we could come in January 2015 and that pass two would be starting. We were very anxious but hopefully that this could help our son. Back in October they had also mentioned that they would retest Rylee and see if she stabilized enough to join the trial as well. While we were had home waiting we started Rylee on some supplements, worked with her daily, and also had a tutor come. Unfortunately this wasn't enough and the disease continued to cause regression and so she could not be a part of the trial. In February 2015 Caden went into the hospital in Milan where he spent the next three months. This treatment started with three days of
Chemotherapy followed by a blood transfusion of his cells that had been modified on day four. Chemo made his very sick but he powered through it and because his immune system was completely wiped out he had to stay in isolation for the remaining days. This was very difficult however he did so amazing. I was so proud of how strong he was. He was very inspirational.
During this time Rylee continued to regress. She struggled with her motor skills, eating, and walking was becoming very slow and unstable. Her smile still shined though and her laugh was contagious. In May of 2015 we were able to come back to the states however Caden has follow up appointments in Italy every six months for several years.
Fast forward to 2017. Caden is now two years older. He has gone to Italy several times and undergone many tests. Unfortunately about a year ago he started showing signs. We aren't sure what the future holds with him but we are trying to stay positive. As of now he's having some difficulties with walking, balance, memory, focus, fine motor skills, bathroom accidents, etc. As for Rylee she has lost a lot. She now has a feeding tube. She had to undergo two surgeries for that because she stopped tolerating feedings and digesting became harder. She is fully disabled. She can't move her body at all on her own. She can't really hold her head up. She is non verbal and her smile and laugh is fading quickly.
We have started this page not only to help with financial cost as we are now preparing for burial and trying to reserve a cemetery location for both children but also to help bring awareness of this nasty disease. Before 2014 we had never heard of Metachromatic Leukodystrophy and had no idea that it was in both of our DNA. Our kids were healthy, smart, typical little kids and over night it seemed to change. I also just want to say thank you to everyone who has been there supporting our family and who has helped in any way. You all are amazing and we can't thank you enough. If you would like to follow their story they have a fb page that we try to update more often. You can find them on fb at “Raising for Rylee and Caden”. Thank you all again!
Rylee and Caden have a FB page that you could follow their story at "Raising For Rylee and Caden- Leukodystophy.
