Aiden was our Christmas wish list giveaway winner in 2019! His mother Samantha Haapala submitted their family of four and shared Aiden's journey with us.
"My son Aiden was diagnosed via newborn screening with VLCADD. He has spent more of his 6 years of life than not in the hospital. He was also born with a stenosis of his airway which meant his airway was 40% more narrow than the average kid his age. On January 1st 2018, my dear son went into respiratory failure and spent almost 2 weeks on life support and a month in the hospital. It was the most horrific thing our family has experienced. There was negligence on the part of the hospital and also things were so complicated because Aiden cannot have general anesthesia due to his VLCADD. I watched my son be emergency intubated all while staying calm to provide his proper protocol to the doctors and also call his metabolic on call team. I did not leave the hospital one time while Aiden was there, honestly I never do when he is hospitalized. I can't bring myself to do it. As you know, VLCADD is so rare and isn't taught in depth in medical schools yet so I have to be the advocate and educator for my son and his proper treatment.
Fast forward to 2019, I was now pregnant! In May of this year Aiden had an airway reconstruction surgery using a piece of his rib to expand his airway to help ensure he wouldn't go into respiratory failure again. I forgot to mention.. On top of the stenosis of his airway Aiden kept getting a webbing forming back there that was blocking his air supply even more. He had 4 surgeries between January 1, 2018 and April 2019 to laser the webbing out and to also dilate a balloon in his airway to help him breathe better and expand his airway. The webbing grew back 4 times before we decided he needed the reconstruction surgery. That was so hard for me to personally deal with because I was 6 months pregnant. For a month I slept in a hospital chair and did not leave my son's side. They had to put him into a medically induced coma for 2 weeks. I didn't get to see his eyes or hear his voice for 2 weeks. He was in the hospital for about a month for that recovery... He has been great since then, thank the Lord!!
No hospitalizations since they did a scope in June to make sure everything looked good. 5 months hospital free and that is a lifetime record for him.” - Samantha
After receiving Samantha and Aiden’s Wishlist for their family the RRR Foundation was able to get everything they requested and $1000 in cash!