Running for Team Hope
Consider Team Hope as you are approached by runners eager to raise funds during the Bermuda Day Half Marathon Derby.
They help people like Toccara Burch-Waldron, a nine-year-old student at Dame Marjorie Bean Hope Academy.
Born with cerebral palsy, she is one of 17 kids who benefit from the annual drive organised by Friends of Hope Academy, the charity set up in aid of the public school.
Team Hope’s efforts help pay for camps at the school over the Christmas and Easter breaks. They also subsidise care at WindReach Recreational Village every August, when Dame Marjorie Bean Hope Academy is closed.
“For us, it’s essential,” said Toccara’s mother, Nichole Burch-Waldron. “No other camp is available for children like my daughter.
“Most people don’t appreciate how much of a necessity it is — they can pick, choose and refuse [camps for their kids] — but if these camps are not available either myself or my husband Reuben, has to take off from work.
“If Team Hope doesn’t have the funds and someone can’t afford to pay out of pocket, then they’re out of luck. There is no other option.”
It is a concern she and her husband had not had before she became pregnant with Toccara, whose specific challenge is semilobar holoprosencephaly. A huge scientific term; what it means in a nutshell is that her brain did not separate into two.
“It was very difficult when given the diagnosis,” said Mrs Burch-Waldron, her eyes welling with tears. “They recommended termination. The diagnosis was put to us: if she survived to term, if she survived labour, if when she was born she could breathe on her own ... there were lots of ifs.”
Semilobar holoprosencephaly was, however, a more palatable diagnosis than the first they had received. Mrs Burch-Waldron described alobar holoprosencephaly as “scary severe”.
“They said lots of foetuses with that problem would self-terminate. My husband and I are both Christians. We prayed about it, put it in God’s hands and decided we wouldn’t take it on ourselves. If He felt she shouldn’t be here, He would make that decision.”
To this day, her husband calls Toccara their “miracle baby” because of all the terrible things that did not happen to her, Mrs Burch-Waldron said. The report the doctors handed them of everything that could go wrong, covered three pages.
“She beat most of those odds. She does have challenges but they didn’t expect her to survive. If you met her you would understand. She has a purpose. She brings joy to people’s lives.”
She spoke with pride of the impact Toccara had on a man at their church, New Creation Worship Centre.
“He had a lot of challenges and he has told us that meeting Toccara helped him. It brought things into perspective for him and helped him turn his life around.
“Everyone who meets her never forgets her. Even though it is a struggle, it’s challenging; every time I see that smile, it just lights up my heart.
“I really do feel like she has a purpose in this world — maybe to help bring awareness, maybe her whole purpose was to turn [that one man’s] life around.”
Toccara cannot sit upright on her own or walk and has limited speech.
“She’s wheelchair-bound and can’t feed herself and is very dependent on other people for everything,” her mother said.
“All babies, up until 18 months to two years, most people are fine. But after that [there are developmental problems for those with cerebral palsy] and you have problems getting someone who is willing to take care of them. Between 2 and 4, when they are able to go to school, is very difficult.”
The family considers themselves “blessed” that private donors and employees at Government’s Ageing and Disability Services “went above and beyond” with their help, getting Toccara a place in a nursery and providing needed financial support so the family could send a specialised caregiver there with her.
“Otherwise, I’m not sure what we would have done,” Mrs Burch-Waldron said. “Once she got to a certain age and she was able to go to Dame Marjorie Bean Hope Academy, it was such a relief.”
Tests after Toccara’s birth determined her challenges were caused by a gene abnormality Mrs Burch-Waldron carried.
A year later, when she again became pregnant, the couple knew exactly what they were up against.
“Any pregnancy after that had a 50/50 chance of [cerebral palsy],” Mrs Burch-Waldron said.
“The second time they knew what to look for on the amniocentesis screen and thank God [Dhakiya, 8,] did not get the gene and she’s not a carrier.”
Her sister, Toccara, however, will have to depend on others for the rest of her life. As such, her family is extremely appreciative of all the help Team Hope gives.
Sponsored runners will wear T-shirts bearing the words “Team Hope” on Friday; a relay team will push a specialised stroller carrying four students over the 13.1 miles from St George’s to Hamilton. The funds raised will also go towards specialised equipment and supplies that the Government does not provide the school.
“The main fundraiser the charity does is on May 24,” Mrs Burch-Waldron said. “I can’t stress how important this funding is for the parents of students who have complex needs.
“Last year, through Team Hope, a company donated bikes that had been adapted for children with special needs. To see the joy on my daughter’s face as she got to ride a bike for the first time.
“When your child can’t do a lot of things and you see the joy that lights up her face when she’s about to do something she’s seen other kids do, it’s just incredible.”
• For more information on Team Hope, visit friendsofhopeacademy.com. Donations can be made to the charity’s HSBC Bermuda dollar account (010-133700-001) and its US dollar account (010-133700-501). Put Team Hope in the reference notes