Help Indie Smith

A very sick little girl is waiting for your help

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Indie needs your help

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Ways to help, please sign our e-petition – Every signature counts!
Health Ministers to approve funding for a National Specialised Service and the use of Eculizumab for aHUS patients without delay Responsible department: Department of Health We welcome the advice from the independent body AGNSS that people with aHUS in England should be treated with Eculizumab if they need it. We deplore the Health Minister’s decision to delay implementation of the recommendation by asking NICE to complete a duplicate assessment, thus prolonging the wait for patients whose lives could be saved or transformed by this drug.

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indie needs your help

In October 2011, two weeks before her first birthday Indie was diagnosed with ‘Atypical Haemolytic-Uraemic Syndrome (A-HUS)an incurable life threatening disorder that is very rare. Indie had been ill for several weeks before diagnosis, suffering with diarrhoea and sickness, and was very dehydrated.

After visits to the G.P. with no improvement she was eventually rushed to hospital twice within twelve hours after suffering seizures. Indie spent one night in our local hospital before being transferred to Great Ormond Street hospital (GOSH) the next day.

Indie suffered kidney failure; she was given a blood transfusion and was placed on kidney dialysis. After many tests were conducted Indie was diagnosed with A-HUS, a rare disorder which causes red blood cells to be broken down. The body then tries to repair these red blood cells by attracting platelets; tiny cells that form clots, once the little clots are formed they clog up the body’s blood vessels. Particularly in the kidneys, causing the kidneys to shut down.

It was at this point Indie was invited to take part in a clinical research study, trialling the drug Eculizumab as an alternative to dialysis. Eculizumab is a drug already approved for use with patients with other blood diseases/disorders. The clinical research study drug was now being tested on infants, children and adolescent A-HUS patients from all across Europe.

Indie has an infusion of Eculizumab every two weeks through a central line in her chest. This involves indie spending a day at Great Ormond Street Hospital. She is closely observed as she undergoes treatment and has many tests which all take their toll on her. She has various other drugs on a daily basis and her blood pressure, temperature and diet are strictly monitored. As part of the clinical research study Indie will be on Eculizumab for two years, up until her third birthday when the study finishes.

Indie has responded amazingly well whilst on Eculizumab. But she has less than one year of treatment remaining. And with dialysis as the only real option for Indie once her treatment finishes, we are now looking to self-fund this extremely expensive treatment at a cost of £250,000 a year.

Donations received will go towards Indie’s treatment. In the event of the clinical research study being extended or a third party funding little Indie’s treatment long term. Any monies collected will then go on to help other children through the A-HUS charity and GOSH.

Please take a look at Gavin, Clare and Little Indie on

 Please take a look at the official AHUS website for more information

 

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