Tuesday, January 27, 2015
By RICARDO WELLS
Tribune Staff Reporter
rwells@tribunemedia.net
THE FAMILY of six-year-old Tarique Miller has renewed a plea for financial assistance to help cover the cost of potential “life saving” treatment for the child.
Angelica Miller, the child’s mother and Marie Miller, her grandmother, said that the family is far from the $200,000 needed for young Tarique to travel to the Joe DiMaggio Hospital in Florida for the treatment.
Marie Miller said that in October the family received written notice from the Princess Margaret Hospital that the facility would be unable to treat young Tarique and requested that the family seek further evaluation.
The letter dated October 3 read: “This letter serves to confirm that the above mentioned patient is under my care. He has a condition that requires laboratory evaluation which cannot be done here in the Bahamas.”
The letter continued: “On the advice of a paediatric allergist, it has been recommended that Tarique travel to Joe DiMaggio Hospital in Florida for this evaluation.”
In mid-November, the family, with the assistance of Social Services, raised enough money to take the six-year-old to Florida.
The Millers said it was at this point the family’s worst fears were confirmed.
“They told us that he had a complete case of hereditary angioedema,” his mother said.
“They told us it was a 50 per cent chance he could be treated with regular injections, but because it was a 100 per cent diagnosis, he would need full treatment.”
Hereditary angioedema (HAE) is caused by a low level or improper function of a protein called the C1 inhibitor. With HAE, the blood vessels are affected. An HAE attack can result in rapid swelling of the hands, feet, limbs, face, intestinal tract, larynx (voicebox), or trachea (windpipe).
Attacks of swelling can become more severe in late childhood and adolescence.
Tarique’s mother said doctors in Florida gave them a new start date to return to the state for the needed treatment, which was set to begin yesterday.
The family is unable to foot the bill and has requested that the Bahamian public assist them through this tough ordeal.
“He was six pounds at birth, I have watched him grow and battle with this,” his mother said. “I just want him to be able to do the things he likes without the pain and suffering. I want him to play basketball, run and have fun, the way kids are supposed to.”
Those who wish to provide assistance should contact Ms Miller at 431-6536.
Comments
EnoughIsEnough says...
I am a little unclear - is this something for which the injections are required for life? or does a full treatment (how long is that exactly?) resolve the problem? The story is heartbreaking but I wish the journalist would have been a little more specific so that people could understand whether this would be a lifelong expense or a short term - it may help to motivate people to come forward and contribute funds.
Posted 27 January 2015, 10:20 p.m. Suggest removal
Cobalt says...
The treatment is life-long and extremely expensive.
Once the body does not make a particular type of protein.... a synthetic version of the protein is required in order for the body to remain in a state of homeostasis. The C1 inhibitor serves as a catalyst in many biological functions, one of which is to inhibit edema (swelling). Without this protein, there is nothing to tell the body when to stop swelling (think of it as a car with no brakes).
To the best of my knowledge, treating this disorder is carried out thru injections seeing that IV treatment can exacerbate the problem by causing phlebitis or infiltration of the cellular interstitial space. And with the child already experiencing fluid volume excess (FVE), he can easily die.
To get an idea of how expensive the treatment really is.... one dose of synthetic immunoglobulin G (ImG) cost $80,000.
Yes..... I said $80,000!
And this is precisely why a MedicAid, Healthcare and Medicare Insurance system in the Bahamas needs to be established. But instead.... Perry Christie is busy bailing out his buddies at the BOB to the tune of millions of dollars. While innocent children suffer.
Posted 28 January 2015, 12:34 a.m. Suggest removal
Puffy61 says...
HAE is a rare cronic condition, There is no rhyme or reason as t when you get attacks or how severe they may be, The family needs to research this condition at any one of the following sites, http://www.haei.org/ http://haecanada.org/ or just do a search and find the different companies that produce the drugs needed. I also read an article that says there will be a pill form coming out soon, I have been suffering from these condition myself since I was born. My first attack was when I was born, back then they didn't know how to really diagnose this condition
Posted 25 March 2015, 11:44 p.m. Suggest removal
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