Leopold: Out of the Ordinary – Life with Xia-Gibbs Syndrome

Just4Children want to raise funds to support Leopold's development through therapies, treatments and equipment.

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Just4Children want to raise funds to support Leopold’s development through therapies, treatments and equipment.

November 15th 2021 Leopold’s life was changed forever.

Leopold was born 26th November 2017. At his 20 week anomaly scan it was noted that he had an enlarged renal pelvis. Constant monitoring throughout pregnancy and several tests after birth showed his left kidney wasn’t working and so it was decided to be removed after his 1st birthday.

Around this time mum started to feel Leopold wasn’t developing the same as the other kids, but health professionals shrugged it off with “all kids develop differently” and “he’s been through a lot in his first year”.

By 2 Leopold still wasn’t walking and so, after a lot of shouting, a referral was made to paediatrics for investigation. Orthopaedics ruled out any skeletal issues and so general Paediatrics referred him for Genetic testing.

15th November 2021 Leopold received a diagnosis of Xia-Gibbs Syndrome.

This is great right? It has a name so it’s known, so something can be done and he will receive support. Unfortunately, Leopold isn’t so lucky.

 Xia-Gibbs Syndrome (XGS) was first reported in 2014. So far less than 300 people have been diagnosed WORLDWIDE. XGS is a neurological disorder which effects mainly intellectual abilities, balance, global development and muscle tone.
Leopold will face many challenges in the future, many of which are completely unknown.

Due to the lack of knowledge on the condition Leopold’s parents have to fight for any sort of assistance for him as professionals don’t understand. They have became experts on the condition in just a few months to try and give Leopold the childhood any child deserves.

Additional physiotherapy, mobility aids, home therapy tools and a garden which is safe and accessible come at a price, but not one that Leopold should have to suffer for.

“As a family our hope for Leopold is simple. To make him safe, happy, loved and support him in being whatever he wants to be.”

Please check out the family blog to follow Leopold’s story
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