Help make Sophie's upcoming medical journey, slightly easier

Co-organized

Annie Caulfield and Kathy Reed are organizing this fundraiser.

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Hi, my name is Annie Caulfield, and I'm setting up this fundraiser in the hope we as a community, can make the life of Sophie and her family, just that little bit easier in the coming 18-24 months.

Below is a message from Kathy, Sophie's mum, explaining what is about to happen and the impact on Sophie, and her family.

As many of you know, our beautiful Sophie, aged 15, has a rare genetic condition called Kabuki syndrome. It affects many aspects of her life including her bones, muscles, teeth, internal organs, her blood, immune system, neurological function, fatigue levels, endurance and more.

She has spent literally thousands and thousands of hours in physio and OT and speech therapy, and more time than we can count in hospitals and medical appointments during her short life. She has an amazing attitude and manages to keep smiling most of the time, despite having faced more challenges in her 15 short years than most people face in a lifetime.

She's a real trouper!

The next 18 to 24 months are going to be huge for Sophie.

Due to her syndrome, Sophie has deformities in the bones in her legs that have led to ongoing ankle, hip and knee pain. She has needed twice weekly physio and exercise physiology appointments just to keep her pain under control. And even with that she still sometimes lies in bed at night crying with pain. This year she has often had to sit out on PE, and sit out on half of her much loved dance classes.

On 23 January she is undergoing a femoral derotational osteotomy on her right leg. Six to 12 months after that, she will have the same procedure on her left leg. This involves completely cutting through the femur and (in Sophie's case) rotating it around by about 30 degrees, then putting it back together with plates, screws and a staple.

Her beloved dance and musical theatre pursuits will have to be put hold. School will have to be put on hold. Any semblance of normal teenage life will have to be put on hold.

She will be in a wheelchair then on crutces for approximately 12 weeks after each surgery, and then undertake intensive rehabilitation to relearn how to walk with her bones and muscles in their new positions.

Estimated time to full recovery is 12 to 18 months for each leg. Once she has recovered she will have additonal surgeries to remove the hardware (plates, screws etc)

It's big and it's scary!

We are seeking help to make this period more manageable for her, and for us as a family.

Any contributions will be greatly appreciated, even if its $5. Every $ will help..

Despite Sophie's surgeries being needed as a result of her Kabuki syndrome, the NDIS classifies them as medical and not related to disability. Meaning they won't fund anything she needs to help with recovery and ongoing function.

Total amount we are aiming to raise is $4,000. More details of the breakdown on that are provided below if you would like that info.

In the grand scheme of life, $4k may not seem a huge amount to many..But please bear in mind that with Sophie's condition we have ongoing medical costs that most other families don't incur, and my capacity to work is significantly reduced. So help with this $4k will make a real impact.

Any assistance wouid be so gratefully received.

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Financial breakdown (if you are interested in the smaller details)

Medical items that will be needed to assist Sophie in her recovery:

Wheelchair - we have a wonderful neighbour who is going to lend us this.
Crutches - we were gifted some by a lady in a local community group.
Adjustable over toilet seat -Cost $129
Air compression boots and sleeve for legs and hips. Her surgeon's physio has recommended the Normatec brand. This is what they use at their practice. She will have access to this twice a week when we travel into town for rehab, but every day use is best for pain managment and healing. You can hire them for $60 per week. She will get most benefit if she can use them for 12 weeks or more after each surgery. So 24 weeks minimum. Then for 2 to 3 weeks post hardware removal (which needs to be done for both legs). So let's say 32 weeks. Which is $1,920. It is $1,999 to buy them. And due to her ongoing issues with Kabuki she will be able to use these for pain relief for her whole life going forwards. Because (sadly) this surgery is not a fix all. She's going to need ongoing maintenance. So buying them makes much more sense than renting them.
Ice machine - this is a machine that you put ice into. It circulates through a hose and sleeve that goes onto her leg. It's considered an essential by her physio and by everyone we have been in contact with who has had this surgery (yay for Facebook groups). Apparently it's an absolute game changer for post surgical swelling and pain, and can drastically reduce the need for nasty pharma painkillers. Brand recommended by physio is Donjoy -Cost $189
Ice maker - to make enough ice to keep the ice machine working all day. Cost - $128 from Big W.
Plus some funds to help with the twice weekly hour and a half return trip to rehab for many months, and me missing 2 weeks of work post surgery when she will need me at home 24/7. Estimated out of pocket = $2,000 plus