FOUR-YEAR-OLD Tahsin Scott has spent almost a third of his life in hospital and has been on the brink of death several times.

Now, an interruption in availability of a new drug that provides relief for his rare condition has left his doctors and parents determined to see him get 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 US$75,000 and have started a
GoFundMe account.

Tahsin has been diagnosed with cystic hygroma, also called lymphangioma, a birth defect that appears as a sac-like structure with a thin wall that most commonly occurs in the head and neck area of an infant. The condition has delayed his physical and mental development.

He has trouble breathing, difficulty chewing food, and his speech is sometimes incoherent. His father is heartbroken that these challenges have made socialising very difficult for the child as he is either ignored or bullied by his peers. Tahsin is currently home-schooled; his father is his main caregiver.

“I really hope I can get some help for him,” Scott lamented. “It has been four years of anxiety. As a father it pains me to see his frustration and sadness on a daily basis and to see him in this condition. Not being able to provide the medical help he needs hurts me even more,” he said.”

Scott quit his job to work from home so that he could care for his child after he was released from Bustamante Hospital for Children’s (BHC) Intensive Care Unit (ICU).

“It is very difficult as he requires special attention,” the concerned father told the Jamaica Observer. “We have to crush and blend his food as the protruding of his tongue does not allow him to chew. After his release from the hospital — where he was on life support for almost a year — I started using my printing skills so I can stay home, and I do odd jobs when I can,” Scott explained. ”

Tahsin’s mother works in the recycling industry and also plays an active role in caring for their son. However, even with their combined finances the pair still finds it difficult to raise the funds needed for the surgery. Smellie has two older children who also require her financial support.

It has been a challenge for the family of modest means to cope. Several medical procedures were done in a bid to try to remove Tahsin’s cysts but they failed. Surgery was done to create space between his tongue and the roof of his mouth so that he could be bottle-fed. A second attempt was made to remove fluids from the area but this made his condition worse and he ended up on life support in BHC’s ICU. He was there from November 18, 2021 until August 8, 2022. He got to go home after being placed on the trial drug Sirolimus.

According to ear nose and throat consultant at BHC Dr Marsha James, BHC has a partnership with SickKids in Canada. Through this initiative Dr Manuel Carcao, who practises at the North American hospital, initiated a global trial of Sirolimus. Tahsin was chosen as the first child in Jamaica to participate. The trial requires that the Sirolimus levels be monitored — a process that can only be done overseas. This process is facilitated through the Ministry of Health and Wellness’ Compassionate Fund.

The drug helped shrink the child’s cysts and reopen his breathing passage. However, Tahsin has not received the medication in months. This was linked to a May 1, 2024 recall, announced by the US Food and Drug Administration, of 1,176 bottles of Sirolimus tablets due to “failed impurities/degradation specifications”.

It appears those issues have been resolved as last week BHC told the Observer Sirolimus was being packaged for shipment to Jamaica. The hospital was unable to provide a date for when the drug would arrive.

Dr James is recommending that Tahsin do surgery overseas.

“Tahsin has extensive growth called lymphatic malformation,” she explained. “The problem is, we definitely do not have the resources to do the surgery here. Also, lymphatics accompany blood vessels and are often close in proximity to nerves. Tahsin’s malformation goes into his tongue and it is also in his voice box, so it is a very complex surgery. It will involve important blood vessels and nerves that would cause significant complications if he had surgery.”

The specialist explained that Tahsin’s family reached out to several hospitals to find one that can accommodate the child’s surgery. Among them was Boston Children’s Hospital which said the four-year-old was not a good surgical candidate at the time because of his age and the complexities surrounding the surgery.

The family has now found a private surgeon who is willing to do the surgery — Dr Milton Waner, who specialises in lymphatic malformations. He is based in New York at Vascular Birthmark Institute. It is a private institution so the fees will be significant.

Tahsin needs one procedure to remove the mass beneath his tongue that causes it to protrude, and another to remove the mass from under his chin.

Even though he has been through so much — his heart stopped eight times while in the ICU and periodic infections of the tongue leave him in terrible pain — Tahsin still finds the time to smile and to play outside with his brother and sister on his good days.

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

If you wish to contribute to his surgery you may visit Tahsin’s GoFundMe page at

https://www.gofundme.com/f/save-12-month-old-tahsin?member=15952793&sharetype=teams&utm_campaign=p_na+share-sheet&utm_medium=copy_link&utm_source=customer

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

Tahsin Scott, on a good day, rides his tricycle.

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

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