There was this movie when I was a kid where the main character told the other main character he always read the last page of a book so he’d know how it ended, just in case he died before he finished. I also like knowing how things end, but that’s a bit much, don’t you think?
In any case, I’m going to cut right to the chase and give you your weekly feel-good moment right off the bat.
Yesterday (Giving Tuesday!), we received an email from the grandma of our newest grant recipient, coincidentally named Grant:
“I don’t even remember how I got to the Chive Charities site, but there was definitely a ‘divine’ intervention,” she wrote. “At the time, I was only looking and dreaming of a BraunAbility van, knowing it was something neither the kids (Grant’s parents) nor Phil and I could take on. But you gave us our miracle! It was getting hard for me to get all 3 kids in their old van....opening the rear hatch and trying to crawl in to put 1 year-old Evie in her seat, trying to herd 3-year-old Gavin into his seat and get him buckled in, and then Grant...carrying him outside or using his wheelchair to get there, getting him physically into a rear-facing carseat and then having to lift his wheelchair into the van, then reversing the process when we arrive at our destination. I can hardly wait until I need to take Grant to an appointment or the 3 kids on day trip.”
And then she said:
“We are a family that has always loved to ‘pay it forward,’ so Phil and I would like to donate $100 per month as long as we are financially able to. It’s not a lot, but hopefully it will help make a miracle for someone else. Again, we are forever grateful to all of you and there really are no words. Thank you, thank you, thank you, thank you!!!
With deepest gratitude,
Jan and Phil
(Grandma and Papa)”
Raise your hand if you feel SO good right now.
So, that’s what happened after we gave Grant and his family a $42,000 grant for a new BraunAbility wheelchair-accessible van. The end.
Just kidding. The van is only one part of Grant’s story, just one of the reasons I tell you these stories every week. I also want you to get to know and love Grant, because he is awesome, and to understand the rare disease that robbed him of his ability to walk, talk, and be independent like other kids his age. I hope that one day, if 3P deletion syndrome affects someone you know, you’ll recognize the symptoms right away and know where to get help. You never know, it’s happened before...
This is sweet Grant when he was brand new, back in March of 2014. The day after he was born, hospital geneticists told his parents Jenna and Greg there were some things about Grant that were concerning: his face was asymmetrical when he cried, his ears sat lower than normal, and he had a sacral dimple (an indentation just above his tailbone). They went ahead with genetic testing and took Grant home to wait for the results.
A day or two after leaving the hospital, Grant’s parents realized he still hadn’t opened his eyes and they still appeared swollen from birth. Jenna mentioned it to the doctor at Grant’s one week check-up, who referred them to a pediatric ophthalmologist, and they added that to their growing list of worries for their new baby boy.
They didn’t have to wait long for the results. At just a week old, Grant was diagnosed with 3P deletion syndrome, a non-hereditary disorder affecting the 3rd chromosome. Jenna remembers it like it was yesterday.
“I thought, ‘What do you mean there’s something wrong with my child?’ I felt really uncertain – am I going to lose him? Is he going to be O.K.? What are we facing? No one could give us answers, there are maybe a few hundred known cases, but they told us not to expect much in cognitive development,” she sighed.
Meanwhile, the pediatric ophthalmologist determined Grant had ptosis, or drooping of the eyes, so at six weeks of age, Grant underwent his first eye surgery.
He got these cute lil glasses when he was about two. He also got a little brother, Gavin.
Followed by a little sister, Evalyn.
Grant goes to PT and OT religiously, and learned to sit up on his own at 2 ½, which happened to be his grandma’s birthday. He can’t stand or walk on his own yet, but his family hasn’t given up hope. He loves playing with his brother and sister, loves going to preschool, and LOVES his stuffed animals.
“We were told once ‘not to expect too much’,” Jenna said. “But Grant has already blown that statement out of the water. He’s a happy, loving young boy surrounded by a strong family, friends, physicians, and teachers that all love him to the moon and back and will do anything they can to help him succeed. We cannot put into words how truly blessed we feel for this AMAZING gift for Grant!”
And that’s the story of four-year-old Grant and his safe, reliable, super-comfortable new wheelchair-accessible van. Big thanks to the small but mighty group of monthly donors that made Grant’s grant possible, and to BraunAbility for being our rockstar partner in making the world accessible for families in need. To become a superhero to more kids like Grant, become a Chive Charities monthly donor RIGHT HERE.
The end. (for real)