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Collier Row mum relies on social media forum for help with little girl’s rare disorder

PUBLISHED: 07:00 01 July 2016

Suzie Ibrahim, Isaac Truman, Ela Ibrahim and Suzanne Truman

Suzie Ibrahim, Isaac Truman, Ela Ibrahim and Suzanne Truman

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A devoted mum has called for more research into a rare disorder after having to rely on a social media forum to protect her little girl’s health.

Suzie Ibrahim with her daughter ElaSuzie Ibrahim with her daughter Ela

A devoted mum has called for more research into a rare disorder after having to rely on a social media forum to protect her little girl’s health.

Ela Ibrahim, of Collier Row, has a very rare digestive disorder called congenital sucrase isomaltase deficiency (CSID).

It means the five-year-old cannot digest foods containing starch and sugar and a diet which is restricted to just 10 types of food.

If Ela ingests the wrong foods or even the wrong amounts then she will suffer from gastrointestinal symptoms, which can last a long time.

Ela’s mum Suzie said: “It’s heartbreaking as a mum to know there is nothing you can do to fix it.

“We have just had to learn to live with it and make sure Ela can get by day-to-day.”

Ela was not correctly diagnosed by doctors until she was three-years-old and the support mum Suzan has received by medical professionals has been minimal.

According to the website Disease Maps, which helps connect people suffering from rare conditions, there are just six other people in the UK with CSID.

Suzie says she has had to rely on a Facebook forum with 300 members worldwide for advice on how to combat the condition.

Without the forum, the mum-of-three says she would be “lost”.

She said: “In an ideal world, I would want all the hospitals to research it more, especially Paediatric doctors who should be aware of the condition and diagnose it correctly from an early stage.

“If the condition is misdiagnosed, it can lead to other health issues.”

The family have been rejected an enzyme replacement available in USA due to funding.

Instead, Ela is given a substitute medicine made in Newcastle which they receive in small amounts.

Suzie said: “I understand the limits on funding but Ela is a one-off, it wouldn’t be like hundreds and thousands needing funding too.”

The “life-changing” diagnosis has meant Suzan has dedicated her time to ensuring every meal of Ela’s day is prepared in advance.

The disorder has had a profound affect with the family unable to do normal day-to-day things like going out to eat or have trips away.

The Parklands Primary School pupil has just started having packed lunches at the school much to Suzie’s delight.

A Just Giving page has been set up by friend and parent Suzanne Truman - in a bid to raise money and support.

She said: “Seeing Ela and the daily battle she goes through really touched me.

“It makes everyone realise how lucky we are to have things we all take for granted.

“Ela is a beautiful, happy, little girl so I just wanted to show the family some support and hopefully raise some money and awareness about the condition.”

Anyone wishing to donate, can visit https://crowdfunding.justgiving.com/suzanne-truman


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