One tough Wolverine - Declan Mitchell
"Each Friday, Declan Mitchell goes to Riley’s Children’s Hospital in Indianapolis.
If you went there looking for him, he would be the one dressed head-to-toe in sports attire, as he always is: jersey, socks, the whole works. Sometimes it’s Michigan gear. Sometimes it’s a LeBron James day. Sometimes it’s the Indiana Pacers.
Declan’s mother, Sarah, says he likes to show off his uniform to the nurses.
And then Declan, just 11 years old, sits in a chair for four hours and gets a blood infusion. Once a week. Every week.
Declan has Hunter Syndrome. It’s a rare, genetic disease that only affects males, and it means that he is missing a particular enzyme that is crucial to cellular repair. Fewer than 500 boys in the country are affected by the condition.
Hunter Syndrome is degenerative, and there is no cure. Declan can still walk and run and climb stairs, but eventually, that will change. He is cognitively impaired — Sarah estimates he has the intellectual ability of a three-year-old — so his speaking ability is limited, though he is able to communicate what he wants or needs. That, too, will cease eventually.
The life expectancy for Hunter Syndrome used to be just 15 years. Thanks to these blood infusions, which replace the enzyme Declan is missing, that number could be doubled.
“Honestly, he really loves going (to the hospital) so much, because it’s a part of his life,” Sarah told me over the phone two weeks ago. “He doesn’t think anything different, and on Fridays, we go there.”
So every Friday, Declan sits. He eats snacks and watches movies to pass the time. He loves Michigan football, since his grandma graduated from the University and his mom attended for a year, so his favorite thing to watch is a Michigan football DVD.
“We actually have to keep replacing (it). Thank God it’s on Amazon,” Sarah joked. “It’s like one of his favorite movies, and it’s so worn out because we watch it all the time.”
But that’s Declan. A neighbor described him as a creature of habit. He watches sports habitually. He plays basketball habitually. He wears jerseys habitually."
CREDIT: Mike Persak at Michigan Daily 2/17/19
https://www.michigandaily.com/section/sports/declan-mitchell
This little kid is a tougher Wolverine than me...prayers for him and his family would be welcomed I'm sure
February 18th, 2019 at 11:42 AM ^
It’s amazing how much these stories affect me now that I have children. I can’t help but picture my own son — a healthy albeit quirky 5 year old — in these scenarios. Breaks my heart and inspires me in equal measures.
February 18th, 2019 at 12:02 PM ^
I cannot imagine having to go through something like this with our kid. I will certainly be praying for this boy and his family.
February 18th, 2019 at 11:49 AM ^
Money is being raised to fund research for gene therapy, which is thought to be a potential cure for Hunter Syndrome, at projectalive.org. There is also a gofundme page at www.gofundme.com/projectalive. As of the writing of this article, the page has raised $2,268,810 with a goal of reaching $2.5 million.
I have choroideremia, which is a rare genetic disorder. Gene therapy research is ongoing for my disease as well. Like Hunter Syndrome, my disease is progressive. The progression of my disease will result in total blindness. Like Hunter Syndrome, we do our own fundraising as well. I have volunteered for the trials that are taking place with gene therapy, but have not been accepted to one yet. One trial wanted someone with poor acuity and one wanted participants with less central vision. I have approximately 5 degrees of central vision remaining.
February 18th, 2019 at 12:42 PM ^
Prayers for you as well my friend
February 18th, 2019 at 1:52 PM ^
MGOWILL, I hope you get into one of these trials. Sorry to hear this.
February 18th, 2019 at 8:06 PM ^
mgowill; Wishing you and Declan all the best with the daily challenges of your respective disorders. Can't imagine what you two are going through. Good luck and thanks for all you do for the blog ?
February 18th, 2019 at 12:58 PM ^
Lord please bless Declan and his family. I’ve worked with kids my whole life. One of my lifelong friends died last year from Sickle Cell anemia. He was about to turn 39. He used to be a patient of mine. There’s nothing harder than working around children that have a bleak outlook in your eyes but have the promise of the whole world in theirs. God Bless you Declan and GO BLUE!
February 18th, 2019 at 2:11 PM ^
Many blessings for the work you do .
My wife is a pediatric nurse working mostly with very ill transplant kids (kidney, liver, gut, etc). You are both better and stronger people than me.
February 18th, 2019 at 2:19 PM ^
My brother-in-law's wife works in the pediatric ICU at Mott's and I cannot fathom what she must see almost every day, and what those parents must be going through. So much respect for people who can work in such an environment.
February 18th, 2019 at 8:03 PM ^
Your brother-in-law’s wife?
So....your sister?
February 18th, 2019 at 10:11 PM ^
My brother-in-law's wife is not my sister on one occasion, but my brother-in law's wife is my sister on another. It depends on who the brother-in-law is married to.
My sister married her college sweetheart. Her husband is my brother-in-law. His wife is my sister.
My brother-in law married his college sweetheart. His wife is my sister-in-law.
the sister of one's wife or husband.
the wife of one's brother or brother-in-law.
https://www.merriam-webster.com/dictionary/sister-in-law
February 18th, 2019 at 1:09 PM ^
Hail to the little victors
February 18th, 2019 at 5:23 PM ^
Prayers for Declan and mgowill as well. Thanks for sharing this story.
February 19th, 2019 at 8:17 AM ^
The Mitchell family has may thoughts and prayers. You are a inspiration to all of us.