Sunday, July 27, 2014

Tulip Tales: Landon

Every day that I post a new 'Tulip Tale' is an exciting day for me. I love being able to share these amazing stories of such beautiful and inspiring children. This really is my favourite part of my blog. Each child is unique and each story is powerful. They all touch my heart and make me think about life in different ways.

Today, I introduce you to Landon. His mother, Michelle shares his story.

*****

Landon was born on June 4, 2009 - a beautiful baby boy, of 8 pounds 14.5 ounces. He was a bruiser to say the least, and I instantly fell in love with him. Though I didn’t know it at the time, my precious little boy was going to teach me the true meaning of strength and love.
Landon was a perfectly healthy baby and reached all of his milestones on time. Looking back now, I can see that there was always some weakness in his legs, but I didn’t realize it at the time. I have an older son, Logan, and I just thought “all babies are different, I cannot compare him to his brother”.

When he was about two and a half years old, the girls at Landon's daycare noticed that his walking was a little different and they brought it to my attention. I made an appointment with a pediatrician at the Carbonear General Hospital, where we were told that Landon had low muscle tone. This was in March of 2012.
By late August of that year, when Landon was just three years old, I knew there was something more going on with him. We took Landon to our family doctor, who confirmed our suspicions. He referred him to a Pediatric Orthopedic Surgeon, who told us that there was nothing wrong from an orthopedic point of view.
Our next step was to see another pediatric specialist in October, 2012. This doctor told us he believed there was something neurological going on with Landon, and referred us to the rehabilitation team at the Janeway Children's Hospital in St. John's.


We first met with the Rehab team in January of 2013. Landon saw all the members of the team: a physiotherapist, an occupational therapist, a speech therapist, a nurse, social worker, and finally a neurologist. The neurologist thought that Landon had a form of Spastic Paraplegia, but testing would have to be done to confirm this. We then set up an appointment with genetics to hopefully get an answer to the cause of Landon’s difficulties. It would be over a year before we would get our official diagnosis.
In the time we were waiting, we visited the Janeway for regular physiotherapy, occupational therapy, and speech therapy appointments, and we would go through the Cerebral Palsy Clinic every six months. We tried to live life as normally as possible, but it was a very difficult time for our family. We knew something was happening to our child, but we didn't know what it was. Moreover, we could see that his walking was deteriorating, and not having any answers was extremely stressful. I spent a lot of time researching Spastic Paraplegia. The stress of waiting for answers was really taking a toll on myself and my family.

Then came the diagnosis. On April 25, 2014, our genetic results were in. I immediately had a gut feeling that something was terribly wrong. They asked us question after question. Questions about his vision. Questions about his swallowing. Was he slow? Did he show any signs of dystonia? It got so overwhelming that I finally just had to tell the geneticist to tell me what they found. I couldn’t take any more questions because she was scaring me and I knew something was wrong.
Landon was diagnosed with FAHN or Fatty Acid Hydroxylase-Associated Neurodegeneration. This disorder is a sub-classification within a family of rare genetic neurological disorders called NBIA, or Neurdegeneration with Brain Iron Accumulation.

Landon’s condition affects the central nervous system by degenerating the myelin (white matter) in the brain and spinal cord over time, causing electrical impulses in the body to slow, leading to decreased motor and brain function.

This disorder is extremely rare. There are less than 30 cases known worldwide, and Landon is the only confirmed case in Canada.
As the doctor was explaining all of this to me, I cried and cried. I was in total disbelief. The only way I can describe that moment in time is exactly like what you see in the movies: when you receive bad news and everything around you becomes a blur. I just stared at them blankly. I had to force myself to come back to reality over and over again to try to pay attention to what the doctor was saying.
My biggest fear had come true: my child was diagnosed with something horrible. A progressive neurological condition. A condition for which there is no cure and no known treatment.



The first couple of weeks after the diagnosis were very hard. We spent a lot of time in disbelief, shock, and despair. We prayed every night and every morning (and still do) for God not to take the light away from our child, but we have two children and had to get out of bed and keep going for both of them. In fact, the morning after the diagnosis, I got up and took the kids swimming. That was the moment I decided that no matter what, I had to keep pushing forward and make life as 'normal' as possible for my family. My husband, Lee and I were very determined and decided early on that we wanted to find others with FAHN and do everything we could to turn this horrible nightmare into something good and God willing, do something to help our little boy.
Since receiving the diagnosis, our family has seen its share of stress and there have been some very difficult moments, but we choose to focus our frustrations into something positive. We are trying to make a difference by fundraising. I get asked all the time “What is your goal?” My response is that I don’t have a monetary goal in mind; I just want to find a cure.
Our fundraising started with Landon’s medical expenses and will soon shift to funding research to find a cure. I have created a board of directors, consisting of friends, family and colleagues. We are working on starting a non-profit organization in Newfoundland and we have some very exciting things coming up in the near future.
We have connected with several other NBIA families. We support each other and that has been a Godsend.


At this time, Landon is experiencing great difficulty with his walking and can no longer walk unassisted. Landon also has speech issues, but speech therapy is helping. We have no way of knowing when or if his disorder will progress, or if new symptoms will arise. 

There are questions surrounding his life expectancy. One study from the University of Washington says the lifespan of someone with FAHN can be in their early 20s to 30s, but with limited cases to study and so little known about the disorder, we are really unsure. We take life one day at a time, and one obstacle at a time. We are proactive and hope to do whatever we can to further research. More importantly, we enjoy every moment together. Our hope is very much alive and we pray every day that a cure becomes available!
What I want people to know is that we are a normal family living with extra-ordinary circumstances. We camp, we fish, we ride bikes, we swim, we go to the movies, we have dinner together, etc. We have to constantly look for ways to accommodate Landon’s limited mobility, but there is not much that we don't do together as a family. Recently, we attended our first Easter Seals Family Camp for children with disabilities, and it was a wonderful experience!


*****
Thank you, Michelle, for sharing Landon's story. I can only imagine how difficult it must be dealing with such a rare condition and not knowing what the future might hold for your family. I love that you are being proactive and enjoying life one day at a time. That is all any of us can do, really. I am so glad that you have been able to connect with other families, and I hope that you know you are not alone in this fight. Parents of children with special needs share many of the same challenges and worries. We need to support each other and make the most of life, despite the difficult circumstances.

If you would like to be featured on Tulip Tales, please email me at: juliebrocklehurst@hotmail.com  Please include a brief description of your child and their condition, along with any pictures you would like to share.  I will contact you with specific questions.

Thanks!
-Julie

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