Jamaari Smith has been shuffled a tough deck.

For the last two years, the five-year-old has spent an inordinate amount of time in hospital and in pain. Currently, the boy, who wants to become a paediatrician, has since developed a compromised immune system that prevents him from experiencing schooling like children his age.

He was diagnosed with a rare skin disease called pyoderma gangrenosum in June 2022 — a condition that causes large, painful sores to develop on the skin, most often the legs.

“Hi,” Jamaari greeted this reporter when the Jamaica Observer team visited his home in Farm district, Westmoreland.

In a rare smile, he pointed to a video of a crawling toddler on his mother’s phone and added, “That is what I used to do.”

He was hospitalised for six months between Savanna-la-Mar Public General Hospital in Westmoreland, Cornwall Regional Hospital in St James, and the University Hospital of the West Indies (UHWI) in Kingston. He was also placed on morphine for pain management.

During that time, Jamaari received four blood transfusions and spent five days incubated and on life support.

“When Jamaari became ill, I had taken vacation days from work and that commenced on June 13, 2022, and I stopped receiving a salary in July 2022. Every money we had in savings and otherwise was used to pay for tests both locally and internationally, medications, transportation and all that. My church and the hospital were the first set of donation I received and it helped to pay for some of the tests that were requested,” Jamaari’s mother, Tameka Rowe-Smith, told the Sunday Observer last Wednesday.

“My husband was employed with Kamash Tours, and it was this along with the huge amounts of donations from all over that has kept us up to date with all the purchases of medications that are required. I am back to work, thankfully, and my husband has his own little business now, so we are able to manage the every day medical expenses on our own,” she continued.

Rowe-Smith, who is employed as secretary to the CEO and hospital administrator at Savanna-la-Mar Hospital for the last eight years, said she and her husband were left with “nothing at all”.

Nonetheless, they still had to find money for medical and transportation fees, diapers, wipes and food for Jamaari while he was hospitalised, along with expenses for her other 12-year-old son who was in grade 5 at the time.

“This took a real toll on me because I had to travel every day back and forth just to visit him even though he could not speak to me. But he knew I was there and that was enough. Things were very bad for us, but I trusted in the Almighty God and the donations started. Family members overseas, in Kingston and both our mothers helped and brought us through. However, when things started getting worse for Jamaari, I had to seek overseas help from a hospital because I wanted the best chance of survival for him,” she said.

On November 17, 2022, Jamaari was discharged from UHWI without any sores on his body, but was left with 75 to 80 per cent of his body covered by scars. A month later, he had a flare-up and the sores started coming back on his skin. He was re-admitted at Savanna-la-Mar Hospital for two weeks.

Doctors discovered that along with the return of the ulcers, he also had a low oxygen saturation level. Upon doing a chest CT scan, the doctors realised that half of one of his lung was not functioning at full capacity. They had put him on oxygen therapy and incorporated breathing exercises to encourage the lungs to function properly.

“He then had another flare and had to be transported to UHWI on Monday, January 16, 2023 and he was treated there and released in February 2022. He received a very expensive drug called Infliximab that was most effective in his healing and this afforded him to go home. The doctors had to give him another expensive drug called Intravenous-immunoglobulin. This has helped, and the disease seems to be controlled now,” Rowe-Smith told the Sunday Observer.

She contacted NYU Langone in New York and the institution displayed an interest in her son’s case. However, she was sent a letter with a down payment request of US$200,000. A GoFundMe account was then created to assist in raising the money, which has seen donations from all over.

However, the target hasn’t been met, and the medical bills continue to bombard the family. The hopeful mother added that Jamaari’s “massive scars are not pretty”, and that is her main reason for wanting to take him overseas for treatment.

“I want for him to have as normal a childhood as possible, with all things considered. I really want to help him. He is my love. He is my heart,” she said, passionately.

“He has always been a cheerful, happy, fun-loving, vibrant and adventurous child with a bright future and I want that to remain as it is. Currently, he’s very self-conscious of his looks with the scars and it pains my heart sometime to hear him speak about them. I try my best to encourage him and I constantly remind him that I love him and we try our best to keep him in good spirits,” she told the Sunday Observer.

Rowe-Smith appealed to Jamaica on behalf of her son who she described as “full of life and potential.”

“Help us. Reach out to us, please. In January of this year, he told me he wants to look after children so they can be better. Help him realise his dream by getting the treatment he needs so he can go back to school,” she said.

“Currently, he has no immune system, and it would be detrimental if I were to send him to school. Additionally, children can be horrible at times and I would not want him to be teased or bullied because of his skin, so I am very afraid to send him back to school. But I am aware that he will need to, eventually; so I’m trying to do the best that I can and also get the best care possible, so please help in whatever way you can,” she pleaded.

Rowe-Smith told the Sunday Observer that since Jamaari’s diagnosis, she has grown even more protective of both her children.

“I try to keep them at home more because I’m afraid of everything. I can’t imagine them being sick and I try my best to prevent it as much as possible so I may or may not be paranoid… it depends on how you look at it. I am also more attentive to their complaints, whether it be about a sore throat, a hurting leg or pain in the stomach.

“I have become their own personal doctor, nurse and specialist. I have done more medical research about illnesses and medications, than anything else right now. I have also become more in tune with God, more faithful and trusting in His word.”

Currently, over US$13,000 has been raised on Jamaari’s GoFundMe account.

Anyone who wants to make a donation can do so at: https://gofund.me/ee29a3e7