Race is on to raise £300,000 for Essex schoolgirl Maddi, 15, to receive life-saving treatment for rare condition
- Credit: Archant
A family has launched a campaign to raise £300,000 to send a teenage girl to America for treatment after she has been diagnosed with a rare disease, which if not treated rapidly can be completely disabling and then fatal.
Maddi Thurgood, a pupil at Joyce Frankland Academy in Newport, was diagnosed with Krabbe disease just two days before her 15th birthday, which was on April 24.
Krabbe is a genetic condition which causes deterioration of the nerve cells leading to loss of function including deafness, blindness and failing limbs.
Maddi, who used to study at Helena Romanes School, was a keen ice-skater before the illness set in but is now so unsteady that she has had to stop skating.
The tragedy of the condition is that the damage it does is irreversible.
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Seeking a cure, to stop the disease in its tracks, the family have already taken Maddi to see a specialists in Milan as well as at Great Ormond Street and sought advice from the UK’s top doctors.
Now this weekend they are planning to take her to The Children’s Hospital in Pittsburgh to have her examined by Dr Maria Escolar, a world specialist in the condition.
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They have been told her only hope is a stem cell transplant and they believe her best chance of getting that surgery fast will be in America and have been advised that the cost will be about $500,000 (£300,000).
Losing no time, Maddi’s aunt Michele Taylor set up an online crowdfunding campaign for her niece on Saturday and told the Reporter on Monday that they had already raised £17,000.
A spokesman for the family said: “We have had donations of £2 and one of £3,000. They are both equally important and equally touching.
“We understand that at 15, Maddi is the only person in the UK to be diagnosed with the disease at her age – usually it is found in babies and the only treatment is a bone marrow transplant.”
She added: “Great Ormond Street has been fantastic and so has the hospital in Birmingham but the damage caused by this disease cannot be reversed and it has already started to affect Maddi. We have no time to lose and that’s why we want to send her to America where they are used to carrying out this operation.”
She said: “Since the diagnosis, we have not stopped researching, phoning and fighting.
“It is so unfair, Maddi is a real sweetheart, a young person who just wants to work with animals and be with her family and that makes it even harder.”
To help Maddi’s family raise the money for her treatment, visit https://crowdfunding.justgiving.com/save-our-maddi.