Old Harbour Bay family of 13-year-old girl with lupus creates GoFundMe account, as they lament high medication cost

"I noticed that her eyes were yellow, and I said 'Selena why your eyes them look like that?'" Merdylin recounted to Old Harbour News when we visited her Burkesfield home Wednesday.

A check at the local doctor’s office in the community provided inconclusive answers before she was sent to the Bustamante Children’s Hospital for further analysis. A battery of tests was conducted, at the end of which Selena was diagnosed with lupus, an autoimmune disease that to date scientists around the world are yet to find a cure. A life-long disease, which often leads to early death, lupus causes the body’s immune system to become hyperactive and attack normal healthy tissues.

Since then Selena has been in and out of hospital with regularity, which severely impacts her desire of getting an education at Old Harbour High School to realise her dream of becoming an air hostess one day. In addition to that, the 13-year-old’s condition is deteriorating due partly to the family’s inability to afford better quality treatment that could allow Selena to live a normal life.

“The doctor said the right medication cost one million, four hundred and odd dollars, but there’s another one that cost sixty-odd thousand (dollars)... so she (the doctor) said I must ask for that brand,” said 45-year-old Mrs Williams, who is a fish vendor at the Old Harbour Bay fishing village.

Selena’s cousin Sheba Chambers has taken the initiative to create a GoFundMe account in hope of generating the US$12,000 needed annually to purchase the appropriate and better quality drugs. So far they’ve raised less than one-third of the targeted amount.

CLICK HERE TO DONATE TO SELENA'S GOFUNDME ACCOUNT 

Presently funds required to purchase Selena’s monthly medication come out of pocket despite being given a National Health Fund (NHF) card, which they say is of very little help.

“Whenever, we give them (pharmacist) the (health) card, dem tell us that this cannot use,” Mr Williams lamented. Wi will get prednisone and some a di likkle ones dem, but wi can neva get all a di drugs dem on the prescription.”

Earlier this year the government announced a $340 million lupus subsidy through the NHF to help an estimated 6,000 Jamaicans, majority being females, living with the disease.

For the Williams this has created a severe economic toll on the family. Merdylin or ‘Angie’ as she also called, is hampered from selling in the market, as she must attend to Selena, who experiences frequent fainting spells, severe joint pains, temporary vision loss among a host of other ailments.

“Anytime she’s menstruating, she vomits a lot, she feels a lot pain and she’s very weak.

“Anytime she’s vomiting she said she feels like she’s going to die. And she would turn to me and said ‘mummy, a it this’. And I would respond to her and said ‘no man, Jesus won’t let you die like this,’” she said.

This in turn has placed extra pressure on her 44-year-old husband who is a fisherman.

Mr Williams said: “From the day the doctor tell me Selena have lupus I have never been happy. No care how mi belly full, mi neva happy. A night sea mi go and as mawnin light mi call ‘Angie’ (his wife) and ask if Selena alright.”

According to Mr Williams they have been trying their best to get help, but none is forthcoming.

“Mi even write to JPS (Jamaica Public Service located in Old Harbour Bay) last year and all now mi no get any response from them,” he said.

Responding to the concerns raised by the Williamses, the NHF is urging the family to make immediate contact with them.

“The family needs to make contact with us for us to determine whether this drug medication is on the vital, essential and necessary (VEN) list for patients seen in the public sector, because without knowing what is the specific medication to which you are referring, I would not be in a position to say ‘yes it is on the list, or no, it is not on the list’.

“And as you can see based on the list on the NHF’s website it’s quite a number of drugs covered for systemic lupus,” said Shermaine Robotham, health promotions and public relations manager at the NHF.