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.

Updates 5

Emma Bain is holding a Charity Fun Day on Sunday 5th May!!! In Clutton, Bristol to raise money for Madi, please come along and join in the Fun! Its at Clutton F.C (behind the Warick Arms...

03/05/13 19:19

http://www.dailymail.co.uk/health/article-2316480/The-mother-daughter-fighting-life-BOTH-develop-ticking-timebomb-tumours-brains.html

30/04/13 10:02

I am now being sent for a urgent MRI scan for tumours due to symptoms and the Gene that Madi carries. Its a specialist MRI center so thats the good bit. Doctor thinks very likely that I do and lots of my meds have now been stopped. But Still we concentrate on Madi being seen!!! x

14/03/13 13:35

We have still not heard back from the surgeon in Bristol! flights to get madi back to the UK and to pay consultation fees, but if we do need to see Dr Chandler in London Harley Street Clinic we have no option but to increase our target! Thank you everyone donating and caring! xx

08/03/13 14:57

We have found a Surgeon in our home town of Bristol who we are hopeful that will see Madi. We think this would be great for us to try this first as we then have support of friends and family there. We are therfore reducing our Target amount and hope that we hit it! THANK YOU!

07/03/13 13:50

Raising money for

Cavernoma Alliance UK

Cavernoma Alliance UK

Charity Registration No. 1114145

Cavernoma Alliance UK aims to provide advice and support for those with cavernous angioma through its organisational skills and by providing a service which makes the general public aware of cavernous angioma.

Donations 95

Donation by Anonymous on 10/08/13

£10.00

Blessings of healing.

Donation by Shiela on 10/08/13

£5.00

Thinking of you all.

Donation by Chris Haig on 03/08/13

£20.00

+ £5.00 Gift Aid

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All the best!

Donation by Chris Haig on 17/06/13

£20.00

+ £5.00 Gift Aid

We wish you and your family all the best. With best wishes Giles, Amy Mia and Tom

Donation by Anonymous on 23/05/13

£20.00

+ £5.00 Gift Aid

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good look in raising all the money you need, and we pray all go's well for you.

Donation by bernard mcdonagh on 14/05/13

£10.00

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Sending you love and hope this helps in some way for your little girl xx

Donation by Laura Dury (Young) on 07/05/13

£5.00

+ £1.25 Gift Aid

Best wishes to all.

Donation by Guy Wallwork on 06/05/13

£10.00

+ £2.50 Gift Aid

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Im so sorry I can't make the fun day. I really hope madi gets the treatment needed x

Donation by Helena Roberts on 05/05/13

£10.00

+ £2.50 Gift Aid

Good luck with everything. Sending positive thoughts to you all xx

Donation by Debbie Chapman on 03/05/13

£10.00

+ £2.50 Gift Aid

Donation by Rebecca Tovey on 03/05/13

£20.00

+ £5.00 Gift Aid

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Donation by Davina Vick on 03/05/13

£10.00

+ £2.50 Gift Aid

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Donation by Terri Cuff on 02/05/13

£10.00

+ £2.50 Gift Aid

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Donation by Anonymous on 30/04/13

£5.00

+ £1.25 Gift Aid

Donation by Esther Davis on 30/04/13

£10.00

Donation by Anonymous on 30/04/13

£20.00

+ £5.00 Gift Aid

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Sending you all best wishes x

Donation by Marcus Gauntlett on 30/04/13

£10.00

Donation by Anonymous on 30/04/13

£20.00

+ £5.00 Gift Aid

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Wish you all the best as we have grandchildren your age hope all goes well Roy and Annette Holbrook

Donation by roy holbrook winning post bookmakers on 30/04/13

£100.00

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thinking of you both and praying for you both .....and that you raise the money you so desperatley need xxx

Donation by max on 30/04/13

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Read your article in Bristol Evening Post and wanted to help. Our prayers are with you.

Donation by Janet and Gordon Young on 30/04/13

£5.00

+ £1.25 Gift Aid

Donation by Anonymous on 30/04/13

£5.00

Donation by Julie Daley on 30/04/13

£10.00

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Just read your story in The Sun, best of luck and sending hope and good thoughts your way x

Donation by JP on 30/04/13

£10.00

+ £2.50 Gift Aid

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On the letters page in The Sun today you will see I got the £50 letter....hopefully this will go some way in helping. Best wishes.

Donation by Stephen Turnbull on 30/04/13

£50.00

+ £12.50 Gift Aid

Donation summary

  • * Online donations£1,517.10
  • Offline donations£0.00
  • Text donations£32.00
  • Total raised£1,549.10
  • Gift Aid£300.63

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