THE mother of a 12-year-old with brittle bone disorder is advocating easier access to resources and educational opportunities for children with disabilities after her daughter — Ramona-Shae Thorpe — was reportedly denied access to public education due to her medical condition.

Sasha-Gaye Wood told the Jamaica Observer that at three months old her daughter was diagnosed with osteogenesis imperfecta — a condition characterised by brittle bones that fracture easily. As she grew, mobility challenges developed and now she moves around with the aid of a walker or wheelchair.

Wood shared that this has resulted in Ramona-Shae being denied access to multiple public primary schools in St James, because administrators of these institutions said they were not equipped to accommodate her needs.

She was, therefore, forced to place her daughter in a private school. Due to the financial burden, Wood said she also attempted to get her on the Programme of Advancement Through Health and Education (PATH), but was denied because her child was enrolled in a private school.

“The doctors at Cornwall Regional Hospital have given me multiple letters to bring it down to PATH, and I’ve been there multiple times. First, when I went there they said that, in order for me to get her on PATH, I had to remove her from the private school system. I did that in grade two. I had removed her from private school with the hope of getting her into government school for grade three, and no government school would take her because they are saying that they are afraid of her getting injured while at school,” she told the Sunday Observer.

“When I went back to PATH and told them that I couldn’t get her into public school because of her situation, they told me that there was nothing they could do to help me. She had to sit out school for an entire year, and then I had to get her back into the private school system,” the mother said.

“I went by the Ministry of Education, they also told me that she needs to be on the list for the Jamaica Council for Persons with Disabilities (JCPD),” said Wood. “I filled out the form, I gave them all the documents that they wanted, and up until this day I have not received a call from any of the said organisations, and I think that this is very unfair.”

Ramona-Shae’s plight has shone a light on one of the rights under the United Nations Convention on the Rights of the Child, to which Jamaica is a signatory, which is that every child has the right to an education.

The Observer met Ramona-Shae in downtown Kingston last month while she was on a school trip to Parliament. At the time she appealed to the prime minister to build more ramps to improve accessibility to Gordon House after she had challenges going up the stairs to view the inside of the building.

Since being diagnosed with osteogenesis imperfecta, she has broken both her legs 15 times. Her mother shared that she has also broken both of her femurs — the strongest bone in the body — 15 times. However, at eight years old her bones became stronger, allowing her to graduate from a wheelchair to a walker.

The mother said that she and her daughter’s father struggle financially to send their child to private school and keep up with medical expenses, but they make the sacrifice because they have no other choice.

“We cannot afford to send her to a private school, but she has the ability to learn. From basic school up until now she has been on the honour roll, so I would not want her to miss out on the opportunity of getting a proper education just because of the fact that the government school system cannot accept her because of her disability,” said Wood, who added that, though it has been difficult, they’ve made it this far with prayer and assistance from relatives, friends and even sometimes strangers.

“I have to give thanks for that,” the mother said.

When contacted for a comment on the matter, Suzette Morris, director of social services at the Ministry of Labour and Social Security with responsibility for PATH and the JCPD, told the Sunday Observer that PATH only has on record one application made by Ramona-Shae’s mother in 2017.

She also said that nowhere on the application did it state that Ramona-Shae has osteogenesis imperfecta.

However, Wood insists that she made multiple attempts to have her daughter enrolled in the programme and that she did inform them of her daughter’s illness.

The matter is being investigated. So, too, is the application for Ramona-Shae to be enlisted at the JCPD. Morris also encouraged Wood to make a fresh application to PATH.

This newspaper was still awaiting a response from the Ministry of Education up to press time.

Wood is also advocating the advancement of Jamaican medicine, stating that she was told by healthcare providers on multiple occasions that they “are not at that stage in medicine” to tackle osteogenesis imperfecta and were often unsure how to proceed with treatment.

Luckily, through research, the mom said she accessed help from an overseas foundation that provides international support and resources to people with the rare genetic illness. The organisation, she said, assisted with a wheelchair and other resources to help strengthen her daughter’s bones and improve her condition.

Despite having brittle bones, a bubbly Ramona-Shae is confident that she can do anything she puts her mind to and envisions a bright future for herself.

“I want to be a doctor because I want to help others with my disability and also be the first doctor in Jamaica to help children with osteogenesis imperfecta,” the 12-year-old told the Sunday Observer.

She said that she plans to engage in research to find a cure for her condition so that other children with the illness, which health experts say affects approximately one in 10,000 to 20,000 people worldwide, can have a normal life.

“I don’t want them to feel like they are different from others because of their disability,” Ramona-Shae said.

“I want them to have the opportunities that I didn’t have and have better access to health care,” she added.

She also called for more awareness about her condition.

“When I go around, most people are asking why I use a walker and I have to explain the whole story. Some people don’t know what is osteogenesis imperfecta, some people don’t even know what is brittle bone and all that stuff, so I feel like they should teach more about it,” she said.

“I think the Jamaican doctors should seek assistance from the doctors overseas in relation to the condition because they know more about the condition, and they have more resources. Together, they can find better treatment and spread awareness,” she suggested.

The 12-year-old also wants to see more disability-friendly spaces, sharing that she often finds it difficult to manoeuvre her surroundings.

“We need more ramps,” declared Ramona-Shae.