Ibraheem’s Story

At the age of 3 years, Ibraheem was diagnosed with a metabolic bone condition called Pycnodysostosis. He has since broken almost every bone due to falls and bumps and has fractured his skull, causing an intracranial bleed.

In December 2013 Ibraheem was sent for an urgent MRI scan and it was found that he had two areas of concern on the brain. During this time Ibraheem was deteriorating quite rapidly. The areas in his brain were confirmed as being iron which then led them to a diagnosis of Pantothenate Kinase-Associated Neurodegeneration (PKAN) in February 2014.

Since his diagnosis, Ibraheem has deteriorated quite rapidly. He has lost his balance, his speech has become severely affected and this has also had an effect on his sleep and his ability to eat. He now uses a wheelchair full time. It’s been a rollercoaster – their house has needed to be adapted, Ibraheem has had to change schools and be statemented.

Support from WellChild

Ibraheem and his family get support from WellChild Children’s Nurse Amika. Mum Taz says that Mika is amazing. Ibraheem was sleeping for long periods of time so Mika has adjusted his ventilator settings at night which has caused him to be less sleepy. She has a really good relationship with Ibraheem and visits him regularly. Taz said she can ring Mika at anytime and she always comes back to her.

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Mika is amazing. Ibraheem was sleeping for long periods of time so Mika has adjusted his ventilator settings at night which has caused him to be less sleepy. She has a really good relationship with Ibraheem and visits him regularly.

Taz, Ibraheem’s mum

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