Crowdfunding launched for 11-week-old baby who could die from the simplest infection
PUBLISHED: 06:00 30 May 2017 | UPDATED: 11:24 30 May 2017
Copyright: Archant 2017
He started life as a seemingly healthy baby boy.
But at just 11 weeks old, Henry Vinen from Shipdham is battling against the rare and potentially fatal condition Severe Combined Immunodeficiency, meaning his body cannot fight the simplest of infections because of a faulty immune system.
In order to reach his first birthday, he needs a bone marrow transplant.
His 17-month-old brother Oscar is being investigated as a potential match.
Henry’s “fraught” parents, Maria and Stuart, are trying to raise £30,000 through a Crowdfunding page to fund his 24-hour care before the transplant takes place.
Before then he has to be kept in a sterile environment in the family home or on specialist hospital wards at Great Ormond Street Hospital.
Mrs Vinen, 30, from Oak Meadow, said: “It is like living through your worst nightmare when your child is ill and the prognosis is they could die. “Emotionally, it is the most stressful and fraught time of your life.
“It makes me realise the importance of family time. You never expect this kind of thing to happen to you.”
She added, because of the risk of infections, she cannot often leave the house or see friends or family which makes her feel isolated.
Mrs Vinen, who has been “overwhelmed” by the response to the Crowdfunding page, said: “If the bone marrow transplant works Henry could be a normal child, which is what we hold onto.”
He was born at the Norfolk and Norwich University Hospital weighing a healthy nine pounds and one ounce.
But after three days, he developed a high temperature.
During his first eight weeks he had eight infections, which affected his feeding and caused him to lose weight.
He now has to be fed special formula milk every three hours and drugs every two hours through a feeding tube.
The infant also receives a fake set of white blood cells every three weeks to boost his immune system.
But despite his illness, he has recently learnt how to smile and play with toys.
To donate visit www.justgiving.com/crowdfunding/Henrysjourney
What is Severe Combined Immunodeficiency?
Severe Combined Immunodeficiency (SCID) is the name given to a group of rare inherited disorders which cause severe abnormalities of the immune system.
This happens when white blood cells, responsible for fighting infection, are missing or working poorly.
Treatment is now available that can reduce the risk of serious infection and cure the disorder.
The first signs of SCID generally occur within the first three to six months of a child’s life.
As the baby’s immune system is not working properly, they will become highly susceptible to infection.
There are two specialist centres in the country that treat children with SCID - Great Ormond Street Hospital and at Great North Children’s Hospital in Newcastle.
Youngsters with the condition need antibiotics, anti-viral and anti-fungal medicines to protect against serious infection.