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IGA Advocates to Get Treatment to a Young Child In Kenya - Letter of Thanks

11 October 2019

We received a lovely letter from Hassan Suraw, a father of a Gaucher patient in Kenya:

“ I officially received sad news from Head of Hematology that my daughter is having Gaucher Disease last year 2018, while she was 15 months old, and it was really a relief for me to finally know for sure what my daughter was suffering from.  This is because we have been to different hospitals every week just to find out what was really the problem.  From the beginning she developed breathing problems which the doctor thought was pneumonia and was treated with Penicillin.  Nothing really helped, she was crying, had lost appetite and sometimes vomiting.  She was also losing weight and looked pale and weak.

In short time she was hospitalized every month, spending at least two weeks in hospitals.  She had multiple examinations.  She was X-rayed like 3 times and tested for different diseases.  Her spleen and liver kept on growing and nobody knew what the cause was.  She didn’t develop like any other normal child.  Despite all this she was happy and smiling little girl.  She had to go through so much pain because the doctors didn’t know what was wrong with her.

At long last, she was diagnosed with Gaucher at Kenyatta National Hospital (KNH) on November 2018.  Sadly, we were told that there was no medication for Gaucher Disease within the country.  I was given a leaflet by a doctor to look for a cerezyme 400 units for every two weeks.  Unfortunately, we were discharged on antibiotics as management for the condition.  Since the cerezyme was not available in my country, so we went to let her die since there was nothing we can do.  After staying for a long week with her, I tried to google and learned more about the Gaucher disease, and that’s where I got some contacts and website of the European Gaucher Alliance, where I decided to follow the patient advocacy organisation through Facebook, Twitter and even contacted them for help through email.  Luckily Tanya Collin Histed (CEO) responded and put me in contact with rare disease Kenya and rare disease Zimbabwe.

I was being visited by the interim chair of rare diseases Kenya (Christine Muteni) at KNH.  I have been advised to apply for Charitable Aid organization to Shire and Sanofi Genzyme requesting for medications, after short while I received an email from European Gaucher Alliance that my daughters application for medication was approved by Sanofi.

After three months of waiting, I received the medicine packed and shipped into my country courtesy of International Gaucher Alliance by Sanofi through Dr Mugo (Sanofi Physicians) despite tough rules and strict regulations in my country i.e. high taxes and high storage fees, Sanofi cleared everything within 2 weeks and my daughter started medication on February 2019.

We started a new chapter, a new beginning, after like two infusion her condition improved from bedridden to smiling.  She started the first batch February and end August 2019 and started the second batch in September 2019, that is after receiving 12 more vials…..

As a father I have accepted the condition of my daughter and ready to work and receive help from well wishers.

And I would like to say thank you:

To the management and board of the International Gaucher Alliance

To Sanofi board of management

To Sanofi physician Dr. Mugo

To KNH head of Hematology professor Mwenda

To nurses at KNG Ward 9A

Interim chair Rare disease Kenya Christine.

Thank you all