Kidney Kids Foundation sees dialysis hope in Sigma Run
IT is barely a toddler itself, but the Jamaica Kidney Kids Foundation has taken on the significant challenge of sourcing funding and equipment to assist children living with chronic kidney diseases, a costly battle the Government has yet to take on.
The foundation, which began in July 2012, had set its sights on helping to raise money to set up a dialysis unit for children. However, faced with the reality that a number of children missed treatment because the only two institutions that offered paediatric kidney services were in Kingston (Bustamante Children’s Hospital and University Hospital of the West Indies) it decided that instead of expending funds to erect a building it would spread the knowledge and the funds.
“We trained 17 doctors from across the island last year in managing children with chronic kidney disease. As a result, we now have a paediatric kidney clinic in Montego Bay, [and in] Mandeville while working with paediatricians in Savanna-la-Mar, May Pen and St Ann’s Bay. That has been very beneficial and patients now are being seen and only have to come to Kingston infrequently,” the foundation’s Dr Maolynne Miller told this week’s Jamaica Observer Monday Exchange.
But with that battle partly won, another loomed.
“We also realised that the island only has three paediatric kidney specialists, and to service western and central Jamaica as well as Kingston properly we need far more, at least five,” Dr Miller said.
That was the genesis of a scholarship fund started with international assistance, which has seen one candidate so far prepped to begin training in Montreal, Canada this July.
“She will return with her speciality in two years and we have at least three more candidates lined up,” Dr Miller told the Observer.
In what was yet another big step, the fledgling foundation “started a family group where (it) educated the parents leading to the formation of a support group where all the children on dialysis or with chronic kidney disease (are able to) meet each other and (where) parents help one another”, she shared.
All those efforts, however, did nothing to banish the spectre of the heightening costs to treat children with the disease made worse by the fact that the two hospitals were incredibly pressured to continue to offer dialysis services while wracking up high bills to suppliers.
Enter Sagicor Jamaica, which through its annual Sigma Corporate Run, donates substantially to several health and child-related charities.
“We are exceedingly glad for this Sigma Sagicor assistance because although we do have fund-raising, when you look at the total cost it’s phenomenal, and at this point there is no Government funding for children with chronic kidney disease, so it’s whatever the parents can afford and our assistance,” Dr Miller outlined.
“So until the Government is able to make some contribution and we have some dialogue we are the children’s lifeline. So what we get from the Sigma Run will help to assist us in purchasing dialysis supplies for the six children who are on dialysis,” she told the Monday Exchange.
She, however, noted that the six are “not the only children with kidney disease”.
“There are at least 40 children islandwide living with chronic kidney disease who have not yet gotten as bad as needing dialysis, but eventually will. There are other children who have kidney disease who do not need dialysis but do have diseases that are chronic and require medication and hospital visits and we are also trying to help with that; but right now these funds are going to help to keep these children on dialysis alive until they either get transplanted or there’s some other alternative,” Dr Miller explained.
The intention of the Sigma Run organisers is to raise $17 million which will be divided amongst three charities of which the foundation is one. The others are the Sickle Cell Unit and the Sickle Cell Trust, and the Special Care Nursery at the University Hospital of the West Indies.
The run, which will take place on Sunday, February 16, 2014 at 7:30 am, will see more than 20,000 walkers, joggers, wheelchair racers and competitive runners participating in what is easily regarded as the Caribbean’s largest road race.