Knowle mum set to get kettle on to raise awareness of son's genetic condition - The Solihull Observer

Knowle mum set to get kettle on to raise awareness of son's genetic condition

Solihull Editorial 1st May, 2018   0

A DOTING mother is getting the kettle on ahead of a special coffee morning in a bid to raise awareness of a genetic condition her son has.

Beccy Leah is hoping to decorate Knowle and Dorridge Cricket Club blue and green in honour of her 11-year-old James who has Neurofibromatosis type 1 (NF1) on May 17 between 9am and noon.

The Knowle resident chose the date as its world NF1 awareness day and people are encouraged to do anything with blue and green, the colours of the condition to help raise its profile.

She will be raising funds for the Childhood Tumour Trust, a charity which has been a lifeline for the family and not only provided help and support but also the chance to meet others in a similar circumstances to them.

The condition causes tumours to grow on James’ nerve endings and has left him unable to walk long distances and needing hearing aids.

Beccy said James was always very delayed as a baby and didn’t master walking until he was over two and it was eight years later the family had a diagnosis.

Over the years James was seen by a rheumatologist for hypermobility, speech and language specialists, physiotherapists and hearing specialists all in a bid to help get the sought-after diagnosis.

Beccy said: “As a mother, I knew in my heart that there was more to him and trolled the internet for answers.”

She thought he had a condition called Noonan’s Syndrome but was left devasteated when the test for that came back negative.

She added: “I knew the coffee coloured patches (café au lait spots) on his skin were of significance and we asked for further genetic testing.

“The results from the additional testing came back positive for NF type 1. We got the diagnoses in September 2016 aged 10.

“Since the letter arrived telling us our son had this genetic condition we felt we had no support or information. Hardly anyone could advise us or even understand the condition at all.

“He was referred by his physiotherapist to wheelchair services in 2016 as we were still having to use a pushchair for him at the age of 10.

“He now uses his wheelchair for any distance as the pain and fatigue of walking is so great.”

Entrance to Beccy’s coffee morning costs £2.50 and includes coffee, tea and cakes.

There is a raffle to be held with over 30 prizes to be won.

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