LANDON & BLAKE

Current Age: Blake is 6. Landon passed away at age 9.

Home State: North Dakota

Diagnosis Date: April, 26 2010

Sanfilippo Type: MPS IIIA

Parents: Jordan and Ashley

Sibling: Gabriel

What it felt like when we learned our child has Sanfilippo Syndrome…

We had known since Landon was about two that “something wasn’t right.” He was physically developing normally, but he had no speech and his behavior was out of control. When we finally got our answer, completely by chance, I had never heard of Sanfilippo. I’ll never forget my first google search. I began reading the signs and symptoms, I knew immediately that this was our answer, and then I saw it – No treatment. No cure. Terminal. In that moment, my entire world came crashing down. I wanted to crawl into bed and never get out. It was the last day of my “normal” life.

How has Sanfilippo affected our children?

Both boys were diagnosed with severe hearing loss shortly after diagnosis. Neither boy has ever spoken or been toilet trained. In the preschool years, Landon was extremely hyper active and little to no impulse control. His sleep was very sporadic for many years. Around 7 years old, we started to see decline in his mobility and energy throughout the day, and he also began having seizures. In September of 2015, at the age of 9, Landon passed away in his sleep as the result of seizure.

At 6 years old, we are already seeing significant delays in Blake’s mobility. He can no longer tolerate long distance walking and must use his wheelchair for outings. As for cognitive regression, we estimate Blake’s cognitive age to be somewhere between 6 and months old. The disease seems to be moving much more rapidly in Blake than it did in Landon.

One thing Sanfilippo could never take away from our boys though, was their innocent spirit and beautiful smiles. To them, every day is the best day to be alive.

How has Sanfilippo affected our entire family?

Our entire life has been changed by Sanfilippo. Modifications have been made in our home to ensure Blake’s safety as his mobility fades away and his falls become more frequent. Outings have to be carefully planned and destinations must be researched to ensure that they can accommodate his needs.

The hardest part of being a Sanfilippo parent is …

I think the hardest part for us is not only living with guilt of having outlived Landon and trying to accept his passing, but knowing that we will go through this again with Blake. The wondering every single day, “Is today the last?” The unknown for Blake and the ache of missing Landon weigh heavily on our hearts.

Not all the affects of sanfilippo have been negative though. Because of Sanfilippo, we have learned to live for now. To make the most of the time we have together as a family, and appreciate each other and the small victories in life.

The biggest misconception people have about being a Sanfilippo parent is …

That I am in some way a “special” parent or that I have some parenting “superpower.” I am just a mom, like anyone else, learning as I go. I do the best that I can, but often, I am terrified. I am not always strong, and I make mistakes. I love my sons, and I am just doing what I think anyone in our situation would do. I’m not different than any other parent, our circumstances are just different.

If we could tell people just one thing about Sanfilippo Syndrome, it would be …

Sanfilippo Syndrome may be rare, but this disease does not discriminate. This can happen to anyone’s child. Not one of us ever thought this would be our child’s life until it was.

Despite all that Sanfilippo Syndrome has taken away from the boys, they have always lived in a way more people should strive to: seeing the best in people, loving everyone unconditionally, and facing everything with a smile.

If we could ask just one thing from the world/people, it would be …

Care. Please care enough to want to do something. Our children deserve so much more than life has given then. Find out what you can do to get involved and make a difference in the lives of these beautiful, amazing, innocent children. They depend on us all to have a chance to live.

Why are we asking you to donate to Cure Sanfilippo Foundation?

I challenge each every person to ask themselves: What would you do if this was your child? If the answer is anything and everything…that’s why I’m asking you to donate. Because as I said, this could be ANYONE’S child. Our children matter. They deserve to live. Every voice, every share, and every donation counts. Our children’s lives are literally depending on it.