A doctor from CHU Sainte-Justine and her team raced once morest time to create a treatment for a toddler who was at risk of losing his sight due to a rare form of conjunctivitis, which saved his vision until now.
“It was worrying… We wondered if he was going to lose his eye and his vision. When I saw that a whole team was struggling for Tyler and all the mobilization around him, it really reassured us, ”recalls Mélanie Désilets.
Her son Tyler Déry, 18 months, had what at first seemed to be a trivial conjunctivitis last summer. The toddler’s eye, however, began to swell to the point where he was hospitalized and then transferred to the CHU Sainte-Justine.
A wood-like membrane had grown under his eyelid. Tyler first had a corneal transplant, as his eye was punctured.
“During the transplant, we removed the membrane that was on the entire upper and lower eyelid, but the next day, it was back,” recalls Dr.re Marie-Claude Robert.
The correct diagnosis came regarding a month later: little Tyler is suffering from ligneous conjunctivitis, a very rare pathology.
“There was an urgent aspect, because we risked losing the transplant we had just done. And that meant losing your vision”, sums up the ophthalmologist specializing in cornea.
The only potential treatment was plasminogen drops produced by Héma-Québec.
Everything to succeed
“There were other treatments […], but we really didn’t want to fail. It had to respond quickly to save his vision. It was our best chance to improve his lot, ”says the Dre Robert.
A major pitfall awaited him: this drug – which has proven itself in other cases – is not approved by Health Canada.
“We fell into an abyss. Our only window was to develop a clinical study to obtain permission so that Héma-Québec might go into production according to the rules,” she explains.
And there was not a minute to lose, because Tyler was in danger of losing sight in one of his small, clear eyes. The whole team quickly mobilized.
In three weeks
“It was a little crazy. I was making calls while waiting for the bus with my children […] and we were discussing the options and the barriers to overcome in order to get the treatment,” says Dr.re Marie-Claude Robert.
“During Thanksgiving, there is a team at Héma-Québec who worked all weekend on paperwork. We made calls for it to be approved as early as Tuesday morning [après le congé]“, she continues to describe the urgency.
The process, which normally takes a few months, was completed in less than three weeks.
Tyler started his eye drops treatment in mid-October. In the early days, his mother had to put it on him every hour except while he slept.
“I was very happy. There was a good improvement in not even two weeks, so it was encouraging, ”drops Mme Desilets.
The child may need to take the drops for life, but at a lower dose. He has regular follow-ups at the Montreal hospital. His mother, who has two other young children at home, travels from Trois-Rivières for each appointment.
After each visit, Mélanie Désilets leaves with a cardboard box filled with dry ice to store dozens of small bottles, which contain the precious drops made with Tyler’s blood type.
Open the way
In recent months, two other patients in Quebec have received the same diagnosis as Tyler.
Even so, it’s unlikely a pharmaceutical company will bring the treatment to market, because ligneous conjunctivitis is so rare, says Dr.re Robert.
However, the commotion made it possible to “save Tyler’s eye and pave the way” for other cases, she believes.
“When I saw that a whole team was struggling for Tyler and all the mobilization around him, it really reassured us”
– Mélanie Désilets, mother of Tyler
“There was an urgent aspect, because we risked losing the transplant we had just done. And that meant losing your vision.
– Marie-Claude Robert, ophthalmologist and director of clinical research in ophthalmology at the CHU Sainte-Justine and the CHUM
What is Tyler suffering from?
- Woody conjunctivitis is a rare form of chronic conjunctivitis, which causes recurrent development of wood-like membranes under the eyelid.
- The orphan disease is genetic.
- It takes a small trauma – for example when a child scratches his eye – to develop the membrane.
- There are only a few hundred cases worldwide.
- In Quebec, three people have plasminogen treatment, including little Tyler.