South Peace News
Hailey Stone is fighting to get some support for her 2 1/2-year-old son, Henry, after he was denied provincial funding for much-needed therapies.
Stone has taken to Facebook to try to tell his story and get support not only for Henry, but for other children in a similar position.
Stone says Henry is a “loving, funny and charismatic” toddler and her family is “blessed” to have him. Her fifth child, he was born by emergency C-section as the result of a placental abruption at 31 weeks.
“At two weeks of age Henry became quite sick with late onset Group B strep meningitis. We were told that if Henry survived he would likely be blind, deaf and severely disabled. We were told that the damage to his brain would likely be significant,” Stone says in a Facebook post she has asked people to share far and wide.
“Henry had a long and tough few months in the NICU and as a result of his meningitis he developed hydrocephalus which required his first brain surgery at just two months of age and only 4.5 lbs. They placed a VP shunt to help pass the fluid that was blocked by the infectious debris from the meningitis.”
Due to brain damage, Henry was diagnosed with cerebral palsy. While he is not deaf or blind, Stone says he does struggle.
“He has level 2 spastic displagic CP and currently cannot walk,” she says.
“Henry needs occupational therapy, he was in the process of getting self feeding techniques as well as potty training help. It impacts all of us, so frustrating. Speech not so bad, he speaks fairly well but with his CP he drools a little as well as mashes food with his tongue that is something a speech language pathologist would help with.”
However, Stone says the family was denied funding for those therapies by Family Support for Children with Disabilities without even seeing Henry personally, a decision she is appealing.
“We were enrolled in the FSCD program as I was assured this is what Henry would require and they would be such a valuable resource for our family. This, I assure you, is not the case,” Stone says in her Facebook post.
The family must now pay for the extra services if they want to get more help for Henry.
“We have minimal funding,” she says.
Stone, who lives in Manning, says if she lived in a major centre it would be much easier to access the services that could help.
“It’s so tough to get services, if I was in Edmonton we could go to physio weekly and for free.”
Stone says the stress of dealing with FCSD is also taking a toll, and, “when you are faced with the challenges and stress of a ‘special needs’ child this is the last thing we should have to do.”
“Have you ever had a child suffer? Have you had to watch your tiny baby go for multiple surgeries? Have you ever had to beg for the best for your child? Have you ever begged for your child to survive? I hope you haven’t and never have to but asking for your help to help mine and many others in this province. Would this happen if we weren’t in a northern community?” she asks.
Stone says she places the blame on the government for making cuts to funding and services.
A growing number of families say they have been denied their past funding or had it delayed since the UCP took power in 2019, a trend organizations like Inclusion Alberta and Autism Calgary have already spoken about with media, although the government has denied any changes to funding.
For her part, Stone is not ready to give up.
“I made a promise to Henry when we didn’t know if he would make 24 hours, I promised him if he fought I would fight as hard as I could for him and that is what I will do.”
“I am not doing this only for Henry but for all the children in the North who continually get denied these essential, life-changing services.”