Let’s give Kate Hope to Walk

Currently Kate can't stand on her feet without feeling a lot of pain, She requires surgery in both feet to fix her tendon shortening and feet deformation caused by her syndrome, and to help her stand painlessly and hopefully walk.

Charmaine Community May 8, 2023 at 1:24 pm
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Project Description

Dear all, we are Charmaine and Daniel and we are reaching out for your generosity once again to help our daughter Kate.

Kate is a 4-year-old girl who suffers from a very rare disease called Tatton Brown Rahmann Syndrome. Kate is one of just 200 people who are diagnosed with this syndrome worldwide, and has a mutation which makes her the only case in the world.

Apart from the difficulties related to the syndrome, she had to go through more than ever imagined. In 4 years, she has already undergone three surgeries: open heart surgery, Achilles tendon lengthening, and abdominal wall defect. The last operation is a very rare defect that one finds on the body.

Thanks to your past contributions, Kate was able to attend various therapies every day, both in Malta and abroad, to improve her mobility. Unfortunately things are getting worse, and she has now been diagnosed with another rare disease called cone dystrophy – this can put her vision at risk. Although she already has difficulties to see clearly like we do, this disease is much worse and can lead to blindness.

Given that with this syndrome she is growing at a much faster pace, the amount of therapies that she is undergoing are helping her to improve, but unfortunately these are not enough. She requires a crucial feet surgery to giver her stable feet that can go flat on the ground and provide stability for balance, strengthening, better weight-bearing long term, and lead her to walking.

In addition to this, we will also have to invest in a robotic walking machine in the near future to help her practise steps and be able to walk independently.

Bearing in mind that she might lose her eyesight, for Kate to walk is imperative for her independence. We are therefore asking for your help so that together we can fund her surgery. This is going to be carried out by the specialized doctor Mr Matthew Dobbs at Paley Institute in Poland.

The estimated cost of this surgery and post operation therapies and other therapies to keep us on track during the 5 weeks abroad are of €36,500.

We want to thank all the generous donators that have already contributed.

The remaining estimated sum to reach our goal €15,000.

To donate, please choose the amount that you wish to contribute from the amounts on the right-hand column. Should you wish to donate more than the sum indicated, you can edit the amount in the text box.

Thanks for your support, kindness and generosity. With your help, you can give a better life to our daughter, Kate.

Much love from Charmaine, Daniel, Kate.

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