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Mum of boy who can’t express pain opens up about wait for lifesaving operation: ‘No child deserves to go through this’

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Being a parent there are some things you never want to hear.

For east Londoner, Francine Awasisa, of Hornchurch, this happened while away in Congo, over 6,500km from her son Iverson.

The 33-year-old mum of three heard the devastating news her “happy boy” had been rushed to hospital in Liverpool with kidney failure while staying with his dad Moses Kasongo, 42.

READ MORE: ‘I was just screaming and crying and went into panic’ says mum of severely disabled child who had cardiac arrest

Immediately upon hearing about his life threatening “swollen heart” she returned to the UK, quarantined, then got to the hospital as quickly as she could.

“Obviously it was a shock, I never saw any sign of anything. I did not know what the side effects were,” she said.

Nearly a month after he was transferred to Evelina’s Children’s Hospital in Lambeth Francine has stayed by her fifteen-year-old’s bedside every night.

Iverson was a “happy boy” who liked to hang out with adults

She is hoping to raise at least £20,000 to pay for a kidney transplant and operation for her son after she was advised against giving up her own organs.

The nurse initially told her it would not be suitable as the operation would leave her unable to look after Iverson and her two other children.

She then found out she wasn’t even a match.

For now, Iverson must stay on a dialysis machine eight hours a day, and she’s been told the NHS waiting list for a kidney is up to two years.

Iverson also has a learning disability which makes him “completely dependent on others”. His mother was resolute she “cannot watch and see him go through this”.

He was diagnosed with Severe Autistic Spectrum Disorder aged two meaning he is unable to communicate verbally, it’s also hard for him to know what’s going on with his treatment.

He risks causing an infection every time he pulls his cannula out, and Francine cannot bear to think about sending him to school where this might happen every day.

Iverson's kidney failure led to a

Iverson’s kidney failure led to a “swollen heart”, leaving mum and dad in complete shock

She said: “It is heart-breaking, no child deserves to go through this.

“At least if he could understand you could have that peace of mind, and that peace that he is aware of it.

“Even if he wanted to ask a question about it, how is he going to do it?

“If he is in pain, how is he going to describe the pain that he is feeling?”

Francine hopes the money will pay for private treatment and the cost of a new kidney, which will allow him his life back.

It will also give her a life back, as she is unable to take a break from caring for Iverson while he is dependent on dialysis.

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Remarking on the difficulties of caring for special needs children she said she was “still learning something new every day” and that carers “need as much help as we can”.

She added: “Children with autism need all the help they can get, and at the end of the day this boy needs freedom.”

Like any other child his age he likes to dance and listen to music.

She hopes he can return to the park, the zoo and dancing at parties and overnight stays with family members which will allow her to give her girls more attention.

So far she has raised nearly £12,000 and you can support the GoFundMe here.

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https://www.mylondon.news/news/east-london-news/mum-boy-who-cant-express-21825253