When she was born, her little leg looked like this.....
It was huge shock, but she was still our perfect little girl! We initially worried she would never be able to run, climb or jump properly. I'm glad to say that at every step of the way she has surprised and amazed us! Nothing holds our girl back! She has had to endure quite a few things in her short little life including a pavlik harness and splinting of her leg, an AFO (leg brace) to enable her to walk, shoe lifts (more like platforms....we didn't really get along with these!) and yet through it all, she's still smiling!
Unfortunately the time has now come that Niamh needs major surgery on her leg to both straighten and lengthen it. This will be the first of at least two surgeries. Given her condition is so rare she is undergoing her limb reconstruction with one of the world specialists, Dr Herzenberg in the USA. During the surgery Dr Herzenberg will make a break in her bone and put on an external fixator (a metal cage with pins that go in to the leg). In the following number of weeks we will turn the pins to gradually straighten and lengthen her leg. (This part is meant to be pretty painful, we're not looking forward to it.) At the same time she needs intensive physiotherapy to lengthen all the muscles and nerves in her leg too. We will stay in the USA for part of the treatment, then after a few months we will return to Belfast (with the external fixator still on) to finish the bone healing. Hopefully the whole thing will be finished and the external fixator off after 6 months.
Hopefully we'll go from a leg that looks like this....
To two straight and equal legs! (I'm looking forward to posting the 'after' pics!)
We are so grateful to have a wonderful doctor here who has provided excellent care in looking after us so far and so appreciative of him agreeing to work alongside the world specialist Dr Herzenberg in treating Niamh. Of course, surgery in the USA comes at a price. The estimated cost of her surgery alone is $53,538.81 and we have to pay the bill in full one week before her surgery, on August 7th 2018. (To those of us in the UK, I know this seems like a huge cost but we are very grateful to Dr Herzenberg and his team for working with us to make it as affordable as possible.) Our accommodation near to the hospital will be $3000. We then have flights, living costs, any unanticipated extra medical bills and I won't be working as I will be caring for Niamh. In short, it adds up to a pretty hefty sum, but for your kids, you'd do anything!!
We have been completely blown away by offers of help and donations from our family and friends right across the world. We have now lost count of the number of people who have asked about a donation page.... so here it is! We cannot express how incredibly grateful we are for all your love and support. Thank you so very much.
Love, The Neils
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