Hello, Eleanor is my beautiful 3 and half year old niece who has been recentlydiagnosed with Leg-Calve-Perthes disease. A rare condition where the blood supply to the ball part (femoral head) of the hip joint is temporarily interrupted and the bone begins to die and break apart. At 2.5yo Eleanor had to learn to stop being an active normal child and is no longer allowed to run, jump or do high impact activities which could cause the hip greater injury. Her Perthes disease has continued and now she has to be in a spica cast (a cast which goes from the top of the hips to either just above the knee or her ankles often with a bar between to hold the hip in the correct location) for a minimum of 6 weeks , to hopefully allow the bone to begin the regrowth process. If not it’s hip surgery for a 3.5 year old. Ellie will have to be in a wheelchair for this time which is a major change for her and her adventurous little self, it also means her mum Catherine will have to have time off and give full time care for the want to be adventurous independent little girl. If any of you have a spare dollar, any donation will help with travel to and from numerous specialist appointments in Sydney and any additional medical costs while Cath is unable to work and Ellie is off her feet. We thank you all from the bottom of our hearts. update: Eleanor has got her Spica cast on which will be in place for at least 6 weeks, she is hating it, total immobility is proving challenging for a 3 year old. Hopefully things start to get easier- words from Catherine her mum- “Day 3... what a journey! For mummas and daddas who've had spica casts, my heart goes out to you all there's nothing to prepare a 3 year old for total immobility. No one warns you the cast adds roughly 10kg onto your childs weight. No one can prepare the battles in the journey ahead. We've been dealt a dud card, doing our best to turn it around. Thanks everyone for the support” update 29/8 We've been advised Eleanor's journey isn't over after the spica cast.. Its 'buying time' whilst we await until She's 5-6 years old to have surgery... currently her bones are to small and fragile for it to occur at the age of 3. Her specialist has advised us she has the worst case of Perthes he's ever seen in such a young person (its the only thing he sees ) and she'll be needing a wheelchair to primarily move around until surgery occurs.. With this news, I'm taking a break off social media to focus on my family, own mental health and of course the intense allied health program for my girl. To each of you who've donated to her account, thankyou! Its going towards her very own wheelchair that fits her needs. To everyone whos checked in on us, means the world ✌️ update 27/10/2024 An update to those following Els journey.. we travelled to Sydney Wednesday, seen her specialist Thursday with bad news her bone isn't growing back and infact is worse since the cast.. there's nothing more they can do but wait.. the childrens hospital wont allow such surgery on a small person bexause its not life threateneing.. Els specialist is trying to rally other Perthes specialists here in aus and Vancouver to stand behind him in the plead for the hospital to allow her surgery. He keeps telling me its the worst hes ever seen in a 3 year old.. She'll likely undergo major hip surgery on her 5th birthday to try and give her some relief with the pain.. probably the best present she could ask for right now! We have 1.5 years left and a whole heap of new appointments to juggle, she'll continue in the wheelchair as much as possible and we'll take the blows as they come
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