Post by matthedm on Jan 28, 2022 21:22:15 GMT
Please help us spread the word!
MNGIE – a rare genetic disorder (only 200 documented cases worldwide) has affected our 3 daughters Gail, Zillah and Verity. Thankfully it has missed our son Owen. There is currently no treatment and no cure. Gail died of pneumonia this time last year – we last stood with her in the Habbin at those Covid restricted games in December 2020. How she would have revelled in promotion!
Then this January, Verity contracted pneumonia. Her husband was already working behind the scenes, contacting medics, researchers and an enzyme manufacturing company in order to set up a trial treatment for Verity and Zillah based at St. George's Hospital, London. They have been given the go-ahead. But no funding. So he needs to raise £500,000…….
He explains it all clearly on a JustGiving page he has set up, hoping to fund this treatment and people have responded well – we are very grateful to each and every one.
However, it is such a huge amount that we really need all the help we can get. If you can't donate, could you possibly pass the link on to others please?
For anyone, like us, who uses real money and would like to donate, we still stand at the front of the Habbin and will pass any donations on to them.
Margaret and Frank Pearson.
www.justgiving.com/crowdfunding/compassionate-treatment-for-mngie?utm_id=1&utm_term=W5yPw3RVG
MNGIE – a rare genetic disorder (only 200 documented cases worldwide) has affected our 3 daughters Gail, Zillah and Verity. Thankfully it has missed our son Owen. There is currently no treatment and no cure. Gail died of pneumonia this time last year – we last stood with her in the Habbin at those Covid restricted games in December 2020. How she would have revelled in promotion!
Then this January, Verity contracted pneumonia. Her husband was already working behind the scenes, contacting medics, researchers and an enzyme manufacturing company in order to set up a trial treatment for Verity and Zillah based at St. George's Hospital, London. They have been given the go-ahead. But no funding. So he needs to raise £500,000…….
He explains it all clearly on a JustGiving page he has set up, hoping to fund this treatment and people have responded well – we are very grateful to each and every one.
However, it is such a huge amount that we really need all the help we can get. If you can't donate, could you possibly pass the link on to others please?
For anyone, like us, who uses real money and would like to donate, we still stand at the front of the Habbin and will pass any donations on to them.
Margaret and Frank Pearson.
www.justgiving.com/crowdfunding/compassionate-treatment-for-mngie?utm_id=1&utm_term=W5yPw3RVG
