Weʼre raising £1,000 to Raise funds for my new niece who was born with a rare condition called PFFD - I will be running the Windsor half-marathon on 30th Sep 2018
- Windsor, UK
- 22 days to go
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What am I donating towards? It’s all well and good for us to ask you to give to Mirielle...but what exactly is this all about that we need your help? Mirielle has a severe case of PFFD, a rare, non genetic, congenital limb difference. On average this condition occurs between one in 50,000-200,000 live births, however Mirielle's complicated case puts here somewhere between 1 in 500,000-1,000,000! Mia’s femur is incredibly short (a few cm’s) & her hip is severely underdeveloped (basically nothing functional there) so essentially the little femur she does have, is just floating around, being held in by skin and muscle. We have seen surgeons here none of which have the experience to treat a case like Mirielle's They all tend to agree that her best option is a complicated and amputation is the best option, but other mums with children with this condition suggest a surgery called a rotationplasty. This surgery is rare & most commonly done to treat cancer patients. We have even had one surgeon say, “there is no point in learning the surgery she needs because it’s that rare she would never get to do it!” So for us it’s a case of heading to world renowned surgeon Dr Paley, who has his own specialised limb clinic in West Palm Beach, Florida. Dr Paley has modified the standard rotationplasty surgery, to develop the Paley Modified Brown Rotationplasty. This is a complicated surgery that can take up to 12 hours & will see Mirielle's little leg turned around 180 degrees to face backwards, her ankle will then act like a knee joint & her knee that is up basically in her hip (along with all the other bits that are there) will form a somewhat functioning hip. Mirielle will then be treated with prosthetic legs for life. This surgery being in America is expensive. on top of that we have a 10 week post op stay, travel, living & everything back in NC to account for, that continues to tick over while we are away. An expense we could never imagine, one that we can’t do alone but one that we never want to say to Mirielle this couldn’t be achieved to give her the best shot at living the most full & active life possible. We are so thankful for every donation, for every share of Mirielle's story. You are all playing a role in giving one beautiful miracle the best at living her BEST life! Thank you (I’ll post some videos in the comments section of rotationplasty related operations...please keep in mind though most are done for cancer and these patients went in with “normal” hips, so very different to Mirielle's case )
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May 26, 2018
I hope u manage to raise what u aim to get for your niece and she gets her op x
May 11, 2018
Good luck to your niece David!!!! 🤞🤞🤞
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