A Tribute on the PCH Warriors and Advocates Facebook Page

Hello warriors and advocates! It’s our favorite day Super Kid Saturday. Today we remember Ian a sweet boy who I wish I had the opportunity to meet. His mothers words paint an amazing picture of her incredible son and I don’t even want to alter her words at all.

“Ian had PCH1A, caused by a mutation of the VRK1 gene. He was not officially diagnosed until he was 9 years old. We found out when he was 6 years old that what ever he had was going to be rare, non-treatable, progressive and terminal. Finally, getting a diagnosis was actually a relief. For me the fear of him passing away without knowing why was unbearable. Originally some doctors diagnosis, Ian as having CP...I think we ultimately knew this was not the case but it helped us to get some services for Ian.

From a medical stand point, Ian's biggest challenges were respiratory. In 2013, Ian ended up in the hospital with RSV and pneumonia. He was intubated and after 3 failed attempts to extubate, he was trache and vented. This was one of the hardest decisions for all of us, as we knew if we didn't do this he would pass away then. We were always as open and honest with Ian and his twin, Becca, regarding his illness. So we talked with both of them about this and asked Ian if he was ready to go to heaven or wanted to still fight. He said he wanted to continue fighting. We were hoping to get another year with Ian, but instead he blessed us with 3 1/2 more years. From other perspectives, Ian was aware of what was happening to his body. He was able to articulate his frustrations with the disease and his body failing him. Since he was able to walk, feed himself, dress himself in the early years, he knew it was changing. Sometimes, he would yell at his body parts to start working again.

I think Ian had many great accomplishments over his 13 years, but I would say his biggest one would have been all the lives he touched. The impact he had on all of those people. We worked to give Ian and Becca all we could and to make the best of everything and to cherish the moments. We did Make-A-Wish in 2010, where he got to meet his superhero, Spiderman. He thru out the 1st pitch at an Orioles game. He went away to sleep away camp for children with complex medical needs for 4 years. He was such an "old soul", caring, loving, always more concerned with others and how they were. Even at the very end, the night before he passed, he wanted to let us know he was ready but worried about us and if we would be ok. Our final conversation with him was telling him how much we loved him and that we would eventually be ok. He went to sleep with a very weak smile on his face....

Ian loved to play tricks on people and he would always find someone who would help him. He loved to throw people under the bus, so you had to make sure you did things the right way, because if you didn't he'd make sure to call you out. His smile and sparkle in his eyes could light up a room, don't ever let anyone tell you that eyes don't speak!”

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