FOUR-YEAR-OLD Tahsin Scott spent almost a third of his life in hospital and came close to death many times.

Now, the lack of a new drug to alleviate his rare condition has made his doctors and parents determined to get him help in the United States.

His parents, Tafarin Scott and Judine Smellie, are appealing for help to fund two surgeries that could change the boy’s life for the better. They need $75,000 and have started a campaign.
GoFundMe bill.

Tahsin was diagnosed with cystic hygroma, also called lymphangioma, a birth defect that presents as a thin-walled sac-like structure that occurs most commonly in the head and neck area of ​​babies. This situation delayed his physical and mental development.

He has difficulty breathing, has difficulty chewing food, and his speech is sometimes incoherent. His father is upset that these difficulties make it very difficult for the child to socialize, as he is ignored or bullied by his peers. Tahsin is currently homeschooled; His father is his primary caregiver.

“I’m really hoping I can get some help for him,” Scott lamented. “It was a four-year period of anxiety. As a father, it saddens me to see his disappointment and sadness every day and to see him in this situation. “Not being able to provide the medical help he needs makes me even sadder,” he said.

After being discharged from the Bustamante Children’s Hospital (BHC) Intensive Care Unit (ICU), Scott left his job to work from home to care for his child.

“It is very difficult because it requires special attention,” said the concerned father. Jamaica Observer. “We have to crush and mix his food because his tongue sticking out does not allow him to chew. “After I was released from the hospital, where I was on life support for almost a year, I started using my printing skills to stay at home and started doing odd jobs whenever I could,” Scott explained.

Tahsin’s mother works in the recycling industry and also plays an active role in the care of her sons. But even with their finances combined, the duo still struggles to find the money needed for the surgery. Smellie has two older children who need her financial support.

It was a difficult situation for a family with a modest income to cope with. Many medical interventions were performed to remove Tahsin’s cysts, but they failed. Surgery was performed to create space between his tongue and palate so he could bottle feed. A second attempt was made to remove fluids from the area, but this worsened his condition and left him on life support in BHC’s intensive care unit. He was there from November 18, 2021 to August 8, 2022. He was able to go home after being given the sirolimus trial drug.

According to Dr Marsha James, ear nose and throat consultant at BHC, BHC has a partnership with SickKids in Canada. Thanks to this initiative, Dr. working at a North American hospital. Manuel Carcao initiated a global trial of Sirolimus. Tahsin was selected as the first child from Jamaica to participate. The trial requires monitoring of Sirolimus levels; This is a transaction that can only be done abroad. This process is facilitated through the Department of Health and Wellness’s Compassion Fund.

The medication helped shrink the child’s cysts and reopen his airway. However, Tahsin has not been able to take the medicine for months. This was in connection with the May 1, 2024 recall of 1,176 vials of Sirolimus tablets announced by the US Food and Drug Administration due to “failed impurities/degradation specifications.”

These issues appear to have been resolved, as BHC said last week Observer Sirolimus was being packaged for shipment to Jamaica. The hospital could not give a date for when the medicine would arrive.

Dr. James recommends Tahsin to have surgery abroad.

“Tahsin has a large growth called lymphatic malformation,” he explained. “The problem is that we absolutely do not have the resources to do the surgery here. Additionally, lymphatics accompany blood vessels and are often close to nerves. Tahsin’s malformation has entered his tongue and also in his vocal cords, so it is a very complex surgery. “It will involve important blood vessels and nerves, which could cause significant complications if surgery occurs.”

The specialist explained that Tahsin’s family applied to many hospitals to find the hospital suitable for the child’s surgery. Among them was Boston Children’s Hospital, which said the four-year-old was not a good candidate for surgery at the time due to his age and the complexity of the surgery.

The family has now found a special surgeon who is willing to perform the surgery: Dr. who specializes in lymphatic malformations. Milton Waner. He works at the Vascular Birthmark Institute in New York. Since it is a private institution, its fees will be significant.

Tahsin needs one procedure to remove the mass protruding under his tongue and another procedure to remove the mass under his chin.

Even though he’s been through a lot (his heart stopped eight times while in intensive care and periodic tongue infections left him in great pain) Tahsin still finds time to smile and play outside with his sister and brother on his good days. .

His father is eager to have the surgeries done so that Tahsin can live a long and normal life.

If you want to contribute to his surgery, you can visit Tahsin’s hospital. GoFundMe page:

Tafarin Scott with his son Tahsin. Scott says he has to quit his job and start working from home to take care of Tahsin.

Tahsin Scott rides his tricycle on a good day.

Tahsin Scott was diagnosed with cystic hygroma and required two surgeries.

Four-year-old Tahsin Scott (front left) with his father Tafarin Scott, mother Judine Smellie and sister Dameika Fuller (left to right). Tahsin’s brother Kaljay Smith is front right.