Desirae was only five weeks old when she began to twitch uncontrollably. Her diagnosis of epilepsy was devastating for the family, but nothing could have prepared them for the challenges that lay ahead.
After being prescribed a series of anti-seizure medications, Desirae was placed under the care of a pediatric neurologist at McMaster Children’s Hospital.
She underwent several diagnostic tests, including a DNA test, which revealed that her seizures were the result of a mutation of the CDKL5 gene. In addition to seizures, Desirae would also experience developmental delays, so she was referred to the Children’s Developmental Rehabilitation Program (CDRP).
When Desirae started with CDRP, she was unable to sit or hold her head upright, and she cried uncontrollably when her mother was out of sight. A therapist from the Infant Parent Program came to their home and used play-based therapy to help Desirae cope with her separation anxiety.
At the same time, a physiotherapist worked closely with Desirae and her mother to achieve developmental milestones, such as sitting and crawling. At two-and-a-half years old, Desirae started making steady progress. She began to pull herself up on furniture and use a special walker in her therapy sessions.
Today, Desirae is a thriving 8-year-old who brings joy wherever she goes.
“She loves meeting people and making new friends,” says Desirae’s mother, Jessica. “Despite all of the developmental challenges Desirae has faced because of her CDKL5 gene mutation, she’s such a warm and loving girl.”
“Desirae keeps getting stronger and we are grateful that our friends at Ron Joyce Children’s Health Centre are helping to make her dreams come true.” – Nancy
Born with an iron will, Desirae never gives up and she is always eager to learn new life skills. Thanks to her resilience and the care she receives through Hamilton Health Sciences, her developmental growth is more advanced than her doctors thought would ever be possible.
“She’s putting together sentences now and she has a passion for singing,” says Desirae’s grandmother, Nancy. “She’s also walking on her own, so we’re always chasing her around and trying to keep up!”
Helping dreams come true
Desirae is a regular visitor to the Prosthetics and Orthotics Clinic at Ron Joyce Children’s Health Centre, where she is fitted with custom-made orthotics that support her foot as she walks.
“The staff provides great care and it’s a very special place for our family,” says Jessica.
Every day brings new surprises as Desirae continues to grow and develop. She recently learned how to dance, which is just the latest example of her determination to defy expectations and live life to its fullest.
“Desirae keeps getting stronger and we are grateful that our friends at Ron Joyce Children’s Health Centre are helping to make her dreams come true,” says Nancy.