Connor Shipp spends much of the day tucked in a hospital bed – wrapped in his favorite superhero sheets – with his mother close by. Connor’s life has heartbreakingly changed in the last few months; he cannot walk, speak or even return his mother's hugs. It wasn't always this way.
"He just was so fun,” shares his mother, Gretchen. “He was such this bright spot and he had a smile that wouldn't stop."
The first nine years of his life, Connor was bright-eyed and very active. He loved Cub Scouts, baseball and making new friends.
"He's very compassionate, he's very kind. He's the first to run up and give a hug or hold a hand."
The youngest of three could make anyone laugh, too.
"He loves dancing. Oh my goodness, the kid dances around the house. It's so fun."
However, last August, "We started noticing increasing fatigue, increasing anxiety, decreasing appetite."
He even got lost in his own classroom and school work - which used to come easy for him - became daunting. After a host of tests, doctors discovered unusual activity in his brain. His body was destroying the myelin - or white matter.
"The white matter is the part of the brain that coats our nerves so that we can function and have control over our emotions, over our muscles."
Without it, Connor's brain is losing the ability to send messages to his body. The genetic disease is called Adrenoleukodystrophy. While it is extremely rare, it is terminal.
“Sometimes I've been a little angry, but I’ve mostly just been shattered and sad.”
His family is heartbroken they only get a short time with him. Gretchen and Jason’s primary focus now is to keep Connor comfortable and safe with medication, a feeding tube and Circle of Life Hospice Care.
"It is hard to sit here and watch your son progress in a way that you never thought would happen,” shares Jason.
But they are not on this journey alone. Before Connor lost the ability to speak, he met with the Make-A-Wish Foundation.
"He looks at the Make-A-Wish lady and he says, 'You know, ever since I was six, I've always wanted to learn how to surf.'"
Connor’s entire family met him in Hawaii where they also swam with dolphins.
Plus, the lifelong San Francisco Giants fan also got a care package from the team which included a letter from the team's president thanking Connor for supporting the players throughout the years. Jason read an excerpt from it, "I want you to know they are pulling for you now, Connor. It weighs heavy on our hearts to hear that such a huge fan has fallen ill. But Giants fans are proven to be resilient."
Back here at home, "Our community has been amazing,” adds Gretchen. “People have come to clean the house, bring us dinners, rake our leaves, mow our lawn; people just show up.”
So the Shipps can focus on what's most important - their courageous Connor - who brought happiness to so many. "He's such a great, great kid."
While Nevada does have legislation to test for ALD, it needs funding which is what the Shipps plan to fight for from here on out. In the meantime, Friends of Conner, Inc. is organizing a special way you can help Connor with treatment expenses. The "Connor's Courage Benefit Run & Walk” is on Saturday, March 7th at Andelin Family Farm. You can find Andelin Farm at 8100 Pyramid Way in Sparks. The 5K run and 2K walk start at 9 a.m. Registration opens You can even participate in a virtual race.
To learn more and register: https://friendsofconnor.redpodium.com/connors-courage-benefit-run.
Or you can make a donation on Connor Shipp’s GoFundMe page: https://www.gofundme.com/f/ConnorShipp.
