Parents fight for their son
With the new year, Angelica Miller, is happy she and her family have life, but at the same time she’s faced with increased financial challenges as lifesaving medication her son Tarique Miller needs has increased to $5,067 per dose — money she has to find, but is not able to afford. She also has to fly to the United States to bring the medication home for her son when he has an episode, and has been doing so for six years through donations and sponsors, water drives and other fundraisers.
Tarique, 9, was diagnosed with hereditary angioedema (HAE), a disorder that results in recurrent attacks of severe swelling. It most commonly affects the arms, legs, face, intestinal track and airway.
HAE is caused by low levels or improper function of a protein called C1 inhibitor. This problem affects the blood vessels. People with HAE can develop rapid swelling of the hands, feet, limbs, face, intestinal tract larynx (voicebox), or trachea (windpipe).
Within the last two months Tarique has had a number of flares, and has exhausted the two-dose supply she had stored in her refrigerator for him. Miller is in dire need of restocking his costly lifesaving medication.
Tarique is lacking the C1 inhibitor protein. As a result his face, hands, feet, testicles and throat have episodes where they swell up. He has had a rash of episodes recently, which have resulted in his mother having to use up the two-dose supply she had stored for him. He only needs his medication when he has an attack.
“Prior to last week his left hand was swollen. Before school closed for the Christmas break, his right hand was swollen, and two weeks before that, his other hand was swollen. He was swelling up back to back. The thing with his attacks is that we don’t know when they’re going to happen. They don’t give any warnings or signs, and if it happens I have to have the medication on hand.”
She is not allowed to run a credit on medication. She has to pay for it upfront.
Tarique who has a doctor’s checkup every six months, and for which he has to travel to the United States for, had his medication dosage doubled in November 2017 after putting on weight, which resulted in the cost increase.
“The medication goes by weight and age. The more weight he puts on the older he gets, the stronger the dosage has to be,” said Miller.
He currently takes 1,000 units of his medication per attack, versus the 500 units he took previously, due to his weight increase.
She says she does whatever she has to do to ensure she is able to have a supply of her son’s medication on hand. When he suffers a flare, she has to take the medication with her to the Emergency Room where she says they administer it to Tarique intravenously through an IV.
And she’s grateful to the people that have heard Tarique’s story and assisted them in the past, but says she is again in need of assistance.
“I can’t find $5,000 in my back pocket just like that, but I do the best that I can for my son,” she said. “After his most recent attacks, I’m trying to see if I can replenish to get another two sets of medication, or even just get one, because I always have to have one medication on hand just in case he has an attack. When he has an attack you don’t know how bad it’s going to be. It might just go in his hand, his face or it may go in his testicles.”
Coming out of the festive season, Miller is asking for people to remember her son. She said any and all amounts are appreciated.
“The way I look at it — a help is a help, because it could be anybody. If someone wants to send up a prayer for Tarique I accept it. If they want to send a donation for Tarique I accept it.”
Tarique attends the Albury Sayle Primary School. His mother said his disorder has also affected his education as during episodes he can’t go to school.
“If his hands are swollen he can’t use his hands to write. If his feet are swollen he can’t walk. And he definitely can’t go if his face is swollen because that’s his throat area, and there may be a possibility that it affects his breathing, so it can be life-threatening. When he had a bad attack last year, he could not breathe, and he ended up in ICU [intensive care unit] for two weeks. If his airways shut down, that’s a problem, and it can get to that level and it’s been there.”
Miller said her only child was normal until age three, when the symptoms started to manifest themselves. Symptoms often occur without a known trigger.
Symptoms of HAE typically begin in childhood and worsen during puberty. On average, untreated individuals have an attack every one to two weeks, and most episodes last for about three to four days, according to the United States National Library of Medicine. The frequency and duration of attacks vary among people with hereditary angioedema, even among people in the same family.
In some cases, an affected person inherits the mutation from one affected parent. Other cases result from new mutations in the gene, and occur in people with no history of the disorder in their family.
“He could have had anything else, but he got that, and I had to learn to adjust to it, because in the beginning with it … I wouldn’t know where I would be if it wasn’t for God, because it’s very challenging.”
Miller gave birth to her son at age 19. His attacks started when she was still a young mother at age 22.
“Even though I was young I had to learn to stand strong and firm and say it’s going to be alright.”
As she seeks assistance for her son, she said most people would be shocked to find that Tarique is a happy well-adjusted child despite his disorder.
“He’s always happy, always laughing, always smiling. He doesn’t let anything keep him down,” she said.
Anyone wanting to assist Miller financially in purchasing much-needed medication for Tarique can do so by depositing money to Bank of The Bahamas account #5975001477. Miller or Tarique’s father Edison Butler can be contacted at telephone 447-9311.