Caroline Co. mom seeks support to get handicapped accessible van for son facing two rare diseases
PRESTON, Md. – A mother in Caroline County says she needs the community’s help.
Melody Joiner has dedicated her life to taking care of her son, who is living with two rare diseases. One of them is Joubert Syndrome, a brain development disorder, plus Trisomy 8 Mosaicism Syndrome, an extremely rare chromosomal abnormality. Both of them combined, it has caused him to be blind, physically and mentally disabled, non-verbal, and he has a seizure disorder.
“It’s very difficult for me to have to ask for help but I knew that it’s come to that point in my life where I have no choice. We were told when he was 4 months old they didn’t expect him to live 6 months and here is 28,” Joiner says.
With these disorders comes countless visits to doctors and appointments. But Joiner says it’s been tougher than ever, in recent years. Christopher is getting bigger, while Joiner is getting older.
“We have fallen, especially in winter months with ice and coming out of the doctors office, we took a bad fall, I knew then something had to change,” Joiner tells us.
Joiner even had to add extra hands to help in the past few months with a caregiver. His caregiver, Tralethia Stanley says, “We go from his chair to the car and then we get to get where we want to go, you have to go to the car from back to the chair to go to the outing for the day.”
But even with more people on deck, it’s been hard on both of them. That’s why Joiner hopes to get a handicapped accessible van. Having this van would even allow Christopher to get out of the house more often.
Joiner believes this could make a true difference in their lives, just like her son has changed hers.
“He’s taught me more than any teacher in my life ever has, he has taught me patience and resilience, and he is tough. He just keeps on going and that’s what keeps me going,” Joiner says.
We’re told if you can’t donate, even spreading the word would be helpful and they are grateful for any support coming their way. To donate, the link to the GoFundMe is here.