Little four-and-a-half-year-old Rylan Johnstone can not see, can not talk and can not walk on his own, but his parents are hopeful stem cell therapy will change all that.
"We're not expecting miracles, we just want to improve his quality of life, and with the stem cell therapy we have a chance to do that," Rylan's dad Ryan Johnstone said.
Rylan has had multiple challenges to overcome since birth. He was born with septo-optic dysplasia, making him legally blind, and his thyroid doesn't work, which means Rylan will have to take synthroid pills every day for the rest of his life. And at just 22 hours old, the boy from Gibsons died in his parents' arms because his body ran out of cortisol.
"His pituitary gland is underdeveloped, so he doesn't produce cortisol, which is like gas for your car for the body, and he needs growth hormone shots every day," Ryan explained.
At birth, Rylan's condition went undiagnosed. It wasn't until he stopped breathing that anyone knew there was a problem. After 10 minutes of sustained CPR, Rylan was resuscitated, but the damage was done. He suffered a brain injury from the incident.
Recently Rylan was diagnosed with autism as well.
It is difficult for Rylan's parents Ryan and Alicia Johnstone to see their son struggle through life with so many challenges. In his short years, Rylan has had more doctors' appointments and testing done than most adults will encounter in a lifetime.
He's seen endocrinologists and pediatricians, ophthalmologists and neurosurgeons, countless doctors, dieticians and specialists.
"He's got so many different doctors he sees, but all they can do is give us a diagnosis and then they kind of pass you off down the line to therapists and they give you paperwork and then you have to call people and go see more physiotherapists and dieticians," Ryan said.
The Johnstone family has been told there is no cure for the problems plaguing Rylan. But his grandma Alison Johnstone refuses to believe the grim diagnosis.
"When he was born, they said there was nothing we could do. Well, I didn't believe it. I didn't want to believe it. So I looked into what was sort of quiet whisperings at the time," Alison recalled.
The quiet whisperings were about a new kind of treatment -stem cell therapy.
Research in the area has been ongoing for years, but has not been embraced by the U.S. or Canadian medical systems, partly due to concerns over where the stem cells would come from. Stem cells can be taken from umbilical cord blood, bone marrow or fetuses, with the latter option causing the most concern. Many doctors from parts of the world where stem cell research has been banned have travelled to China, where great strides in the technique are being made at the Beike Biotech centre.
According to their website (www.beikebiotech.com), it is said that stem cells, once injected into the body, find the areas that are damaged and repair them.
After years of investigation into options to help Rylan, Alison recently found some parents on-line who were taking their blind child to the Beike Biotech centre in China for stem cell treatment.
Through private messaging and learning more about the treatment in China, Alison made up her mind - Rylan was going to get the stem cell treatment somehow.
"I came upstairs and said to my husband Rob, 'We're going to China,' and he said, 'OK.' I think we were all just sort of waiting for something," Alison said.
Making the decision was just the first step. Now the family has to come up with $40,000 to have the therapy performed. Rylan's procedure would use donated umbilical cord stem cells and include eight intravenous infusions.
People from around the world with similar issues to Rylan's have undergone the therapy at Beike Biotech and have experienced vision restoration, regained muscle control and healing in many parts of the body. The family is hopeful the same healing will come to Rylan.
The Johnstones are raising money any way they can to take Rylan to China for the treatment. Alison has started a Facebook page titled Rylan's Fight for Sight, and she is currently brainstorming other fundraising options with friends.
"Different groups have told us to send them a letter and they'll see what they can donate. We're even going to sell one of our vehicles. We'll do what we have to do. Ryan's working two jobs so he can help send him," Alison said.
The family has set up a trust fund for Rylan in Alison Johnstone's name at CIBC. So far they have $1,100 saved for the therapy.
The hope that treatment will improve Rylan's quality of life in some way is spurring the family on. Ryan hopes to be able to take his son for a walk someday or go camping or fishing or maybe throw a ball or swing a bat together.
"And I want him to be able to touch my face and see his daddy and his mommy. To be able to put faces to all these names and voices he's heard from the beginning of his life, but he's never been able to see them," Ryan said.
Rylan's mother and grandmother will travel with him to China for the stem cell treatment as soon as the $40,000 is raised.
If you would like to help organize a fundraiser or get involved with Rylan's Fight for Sight, you can contact Alison at 604-886-3684. You can also keep up to date with the fundraising effort on the Rylan's Fight for Sight Facebook page and at www.rylansfightforsight.blogspot.com.
