GORE BAY—Life for seven-year-old Maxim Bell, who was diagnosed with cerebral palsy and a seizure disorder at 14 months, and his family hasn’t been easy, but a ray of sunshine shone through last week when the Starlight Children’s Foundation of Canada granted Maxim a wish, according to a Manitoulin Expositor story.
A party was held at the family’s Gore Bay home, organized by local Starlight wish granters Linda Taylor and Diana St-Pierre, last week bringing together family and friends in celebration of Maxim’s wish being granted.
“Maxim’s original wish was for a pool, he loves being in the water and outdoors, but Starlight suggested a hot tub because it was something he could use all year round,” explained Maxim’s mom Amanda Hore. “It will be a therapeutic addition to his life and will continue to help him throughout the years as he grows. The warm water and jets will relax his muscles and help stimulate body movement in the water.”
Starlight organized the purchase of the hot tub, its installation at the family home and an electrician to hook it up.
Maxim’s family, which includes dad Mitchell Bell and little sister Layla Bell, in addition to mom Amanda, are limited in the activities they can do as a family due to Maxim’s condition.
“We are excited for the hot tub as it is something that will not only help Maxim and bring him joy, but is also something we can do with him as a family,” said Ms. Hore.
When Maxim was born he scored well on the development scale and as he aged was hitting all the laid out milestones, however the family was concerned with the lack of use of his right hand.
“We took him to the local doctor’s office just to make sure all was okay,” Ms. Hore explained. “We would not receive the news we were hoping for. Instead, Maxim was referred to a pediatrician for further examination. After the pediatrician checked Maxim and asked all the necessary questions she told us she believed our son had cerebral palsy, a mild case in which he may walk and talk and perform every day activities, but with a lot of therapy required. We were sent for tests and scans to determine the exact diagnosis.”
At his first birthday party a few months later, after family and friends had left, Maxim had a grand mal seizure and was rushed to the hospital via ambulance.
“At 13 months Maxim had an MRI, and the results showed damage to the brain and thinning of the white matter, a diagnosis of spastic hemiplegic cerebral palsy, which would affect the muscles and brain activity on the right side of his body,” continued Ms. Hore. “After multiple seizures he was admitted to the pediatric floor for two days. More testing was done and Maxim was also diagnosed with a seizure disorder.”
“To this day Maxim continues to have seizures at any time, with various triggers even as simple as lighting or noise,” shared Ms. Hore. “He takes two medications three times a day to control the frequency and severity of the seizures. We attend multiple appointments yearly to monitor any changes and to learn more of how to help our son. He also has daily physio and occupational therapy routines at home and school where he is now a Grade 2 student.”
Ms. Hore explained that Maxim receives botox injections in his right arm and leg three to four times per year to help loosen his muscles and tightness in limbs. He also wears a brace on his affected leg every day to assist him to walk, as well as special pediatric equipment like a walker and stander, and uses a pediatric stroller.
“He does not talk yet, but that hasn’t discouraged us in the slightest, as he has already beaten so many odds,” said Ms. Hore. “We work with him every day, promote a learning environment and shower him with support in hopes to continue to make strides (literally) to progress. Maxim has gone through more in his seven years than many go through in a lifetime, yet he continues to greet everyone with the biggest smile and all the love in the world.”
“Starlight Children’s Foundation Canada is part of Starlight’s global network, serving seriously ill children and their families through partnerships with more than 160 healthcare facilities,” states a press release from the foundation. “Over the past 25 years, Starlight has become a leading global charity that partners with experts to improve the life and health of kids and families around the world. Collaborating with innovators in pediatric healthcare, entertainment and technology, Starlight provides a unique blend of family-centered programs and services from hospital to home.”
“When a child is seriously ill and the treatment is stressful, tiring and painful, the idea and anticipation of a Starlight wish can often help to offset this experience,” notes the press release. “Special moments and happy memories are important parts of being a child, especially for a seriously ill child. The simple act of deciding on a wish can empower a child or teen when much of their world is controlled by illness.”
A Starlight wish provides a unique once-in-a-lifetime experience to children between the ages of 4 to 18 years (up until their 19th birthday) who are seriously ill.
“We are grateful for this opportunity to work with this foundation and are so hopeful and excited for Maxim to receive his wish as he truly deserves the world,” concluded Ms. Hore.
If you would like to learn more about Starlight or wish granting, you can call Linda Taylor at 705-282-2273. You can also visit www.starlightcanada.org or call the foundation directly at 1-800-880-1004.
