Friends and Supporters,
Back-to-back days of Max! This time, we are going to tell you the story of Max from Montana. Max is another Schaaf-Yang Syndrome warrior. Max is 9 years old, and we got to meet him in Denver last October, and what a treat. Max is one of the early diagnosed SYS warriors and we’ve been watching his development on Facebook for the past 2 years after we received Hayden’s diagnosis. We got to know Max’s parents, Jaimie and Steve, and there is no wonder why Max is a sweet kid – he gets it honest!
Max is 100% reliant on others to care for him. He is immobile, non-verbal, and is fed through g-tube. He also suffers from weak bones, contractures, sleep apnea, has growth hormone deficiency and is cognitively and intellectually delayed. However, this doesn’t stop Max from being the most sweet and loving child you will ever encounter.
Max’s biggest challenges right now are his mobility and communicating his needs and wants. Max is getting bigger and harder for Jaimie and Steve to carry and transport him. He has hurt his ankle many times and his parents don’t know how it happened or the severity of the pain – or even where the pain is coming from. It’s heartbreaking to not be able to figure out where his pain is, but his parents do their best. Gaining mobility and communication skills would be huge steps for Max and he is working hard every day to develop those skills. In fact, Max has just mastered the skill of being able to sit up from a laying down position. To say his parents are proud of him would be a huge understatement!
One thing Courtney and I learned that are common with kids with rare genetic disorders is their levels of pain tolerance seem to be much higher than typical kids. Its one of the things that is hard for us to wrap our heads around that these kids are in pain and don’t know how to communicate it to their loved ones.
I asked Jaimie how Max having a rare disease has impacted her family’s life. She said, “In every way! Every decision we make in our lives must include Max. Even simple things like going to the grocery store must be coordinated between Steve and me. I can’t remember the last time we had a weekend, just the two of us. You need a special person to take care of Max. They need to be able to move him around, change him, know how to tube feed and then finding someone to watch him overnight is pretty much impossible. We have accepted there probably won’t be couples’ weekends in our future and that’s OK.”
I don’t know how what Jaimie said hit you, but it makes me want to fly to Montana for the weekend and stay with Max so she and Steve can have a weekend of their own. Unfortunately, what Jaimie described is how it is for a lot of parents with kids with special needs.
Max is the sweetest and most loving child you will ever encounter. All his friends and caregivers absolutely adore him, and his smile will completely light up a room and melt your heart. Jaimie and Steve’s biggest wish for Max is that he has some kind of independence and that he is happy and surrounded by people that love him unconditionally as they do.
To donate to help to continue to fund research to help find therapeutic therapies or a cure for SYS, please donate at www.faithforhayden.org/donate.
With love,
Matt and Courtney
