By Dan Chalcraft
For an Abbotsford couple, having twins with cerebral palsy is not only double the time commitment, medical appointments and specialized equipment – it is also double the love. The parents’ devotion is matched by the joy they receive from their identical twin daughters and the sense of community they inspire from friends and families who have joined them on their journey to create a truly fulfilling and independent life for the young girls. They have deepened their sense of family and learned to be strong advocates, while learning to appreciate every small success and achievement along the way.
The family have created a Go Fund me campaign to purchase a specially adapted vehicle to support their children to attend medical appointments and maybe one day go on a family vacation. Their story is one of perseverance, education and community, as they adapt to the needs of four children and many challenges while pursuing their long term goals of health and independence for the whole family.
Jayde and Skyla
Twins Jayde and Skyla Robinson were born 25 weeks premature. For parents Alex Robinson and Desiree Gauld, it was touch and go at first, and they didn’t know what to expect. With Skyla weighing only 804 grams and Jayde weighing 813 grams, they were rushed to the neonatal intensive care unit and quickly hooked up to various machines as the doctors and nurses scrambled to figure out how to best deal with the situation.
The twins spent 104 days combined at BC Children’s Hospital and Abbotsford Regional Hospital. Complications in their first week of life affected their body movement and coordination, leading to a diagnosis of cerebral palsy and requiring both girls to use wheelchairs.
“It came as a real shock. Of course it’s changed the family life for sure. You appreciate the smaller things in life; it’s very difficult at the same time,” says Desiree. The initial learning curve was steep. Desiree explained that they were looking for information in many different places. Unfortunately, many of the resources and programs aren’t all in one place, and there isn’t enough awareness to promote a full understanding of cerebral palsy.
However, she now believes that her family has found most of the information that is available. Both parents feel they need to be strong advocates for their children. Part of that means becoming a different kind of parent: a therapist, doctor and nurse all in one.
Advocating for their children
Alex is a stay-at-home dad and looks after his twins at the moment. It’s a full-time job as every week there are doctor and physiotherapy appointments, as well as transferring the girls to standing frames, walkers and specialized chairs feeding chairs. “You know they are totally dependent on us, right? So life is extremely busy. But we make it through day by day,” he says.
Despite the challenges they face, Desiree says one of their short term goals is to stay healthy. She hopes that in the next couple of years, their children will be able to do everything that other children do and are a part of the community.
But, he concurs with his wife about wanting the proper care and support for his girls. Robinson says that while it is still difficult for them to forgo using their adapted standing chairs, he feels they are making progress and that by using their walkers and both legs they will learn to avoid overcompensating on the left side. “[The] long term goal would be that they are walking with walkers in their own way and getting up and going to school and having fun, and definitely in the long term that they are independent,” he said.
Alex and Desiree feel fortunate to have the support of their families. “Our family and friends have been really supportive. We don’t know where we would be without them,” says Robinson. “They help as much as they can and give an extra hand just holding the girls. We have two caregivers that help but family has been just huge.”
As a new advocate for the disability, Desiree feels there isn’t enough awareness of cerebral palsy in the community, especially around World CP Day (held every year in October) and at Open Door Daycare Preschool & Out of School Centre, where she wanted to promote the event. She points out that few people really understand what cerebral palsy is and how it affects people. Desiree feels it gets bracketed under the umbrella of a learning disability and thought of as just a disability. She believes there needs to be more focus on cerebral palsy in light of the statistics – it is the most common childhood disability – and disproportionate overall awareness of the condition.
Striving for the best in life
In terms of funding for the girls, they don’t have enough to accommodate both of them. “We don’t get a break from the day for many hours so as far as caregivers, it’s just us at the same time which takes the load off but getting breaks is not long enough,” said Desiree. “At night time we do get a bit of respite but they don’t really sleep through the night so there is a lot of crying”. Their insurance covers only a tiny portion of the physiotherapy required, and doesn’t begin to touch the specialized equipment which the twins quickly outgrow, as well as other beneficial therapies such as swimming and horseback riding. The parents also balance the needs of two other siblings, an older daughter and brother, but dream of one day going on a family vacation for everyone.
The family plans to have a fundraiser soon at Magnuson Ford in Abbotsford. With help from donors like Variety Children’s Charity and CKNW Orphan Fund, they hope to be able to purchase a fully equipped vehicle which will accommodate two wheelchairs and the two other children, as their current mini-van isn’t practical anymore. To support their cause, please click here.