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Anna laforgeancienne Hillman avatar
Anna laforgeancienne Hillman

Madi Hillman- Brain stem genetic cavernoma with hemorrhagic stroke on 06/01/09 age almost 5 and now with residual dense left hemiplegia.

asking for any donations for Cavernoma Alliance UK because of my little girl Madi

25 %
£1,549.10
raised of £6,000 target
by 95 supporters
Donate

Cavernoma Alliance UK

We raise awareness of cavernoma to improve the lives of people affected

Story

Thanks for taking the time to visit my JustGiving page.

We are British, we have lived in France for 4 years now.

My now 9 year old little girl has a Cavernoma Tumour on her Brainstem and on the 18th April I myself her mum, have been diagnosed with mulitple Cavernomas.

We are desperate to raise money to get Madi seen my one of the UK's leading peadiatric Cavernoma Tumour Specialists Dr Chandler of Harley Street Clinic and he has agreed to take on her case as a matter of urgency! This is a Private clinic and we will need to raise the funds to get her there, accomodation, his fee's and of course scans and treatments.

We also want Madi to be seen in a specialist clinic in Chicago to undergo specialist scans.

I am writing to you about my daughter, Madi Hillman, who at the age of 5 years old at the time and who had been otherwise fit and healthy  diagnosed and subsequently operated on for a Cavernoma Tumour on her brain stem. 3cm wide! Madi's condition is that it is very rare to have presented in childhood and she is tragically unlucky to have her cavernoma in the brain stem. This is what has made it life threatening for her in contrast to most other cases where, although very serious can be without symptoms and can be amenable to surgery if required.

 

Other than surgery when technically accessible, radiotherapy has been considered but is not without it's risks to the surrounding brain. No medication/chemotherapy was mentioned in the Internet weblinks that I found but I do know that propranolol medication has been used to great affect in treating congenital cavernous haemangiomas of the skin.

 

We first became aware of a problem when on 4th January 2009 Madi collapsed at home and suffered a Stroke. Thus leaving her Paralysed on her left side of her body and the Right side of her face. 

She was taken to Saint Gaudens Hospital and, after a CT scan to Purpan Hospital, Toulouse. Following an MRI she was diagnosed with a cavernous hemangioma.

Madi was operated on by Doctor Boetto on 19th January 2009 (the operation was filmed and documented and he is now writing a paper on his findings). Following this operation she still has an 'image' remaining on her MRI Scans and they now believe that this could be residual Tumour.

Madi remained in hospital for five weeks and was then transferred to the Paul Duttan Centre in Toulouse for physiotherapy and subsequently discharged home. I was 24 weeks pregnant with my son at this time of her stroke.

Since then she has had 2 more operations on her brain for MRSA.

Fortuntely she is clear of this now.

Unfortunately In December 2012 Madi began to suffer from headaches and her balance impaired again, her behaviour is changing, symptoms of before and we once again took her to Purpan Hospital, Toulouse where they performed a CT scan. Not even an MRI.

We left without even seeing her surgeon and then reeived a letter to say she will have an MRI in 6 months. By this time it will have been 18 months since she last had an MRI! We feel that being left to wait for 18 months for an MRI is simply not doing enough. The recent deterioration in Madi’s coordination is something we cannot ignore. 

We would therefore like a second opinion from a doctor who specialises in treating paediatric cavernous hemangiomas on the Brainstem, in the UK as we are considering a permanent move back to the UK due to Madison's ill health. We have a Specialist willing to see her and take on her case asap but we need funding to do this and this is why we are asking for your help in donating however big or small!!

I really hope you may be able to help us. Many Thanks in advance

 

 

 

Yours sincerely, 

 

Anna Hillman (Madi's Mummy)

 

So please dig deep and donate now.

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