Levi’s Story

Niki had a normal pregnancy with Levi, who was born at 42 weeks. However, Levi was born floppy and had no reflexes. He spent his first 9 months in hospital – 6 of these in PICU. He had a muscle biopsy and was diagnosed with Myotubular Myopathy in January 2009.

Levi spent short periods of time at home but was mostly in hospital until March 2011 when he was finally discharged home with a care package.

Since 2011 Niki (Levi’s mum) has managed his care and kept Levi home and well. He was readmitted to hospital in May last year as Niki was finding it difficult to continue to manage his care at home – whilst her husband worked full time and she had two other children to care for. She had no respite care for Levi, their care package was inadequate and she says that she was ‘at breaking point’.

Support from WellChild

WellChild Children’s Nurse Tracy became involved once Levi was admitted back into hospital and immediately understood the issues the family was having.

Niki says that Tracy has been really supportive and totally understands what they are going through and what they need. She tries to help with everything, she has even provided training in school. Despite this Levi’s family are currently still having some difficulties with the care package. Also, last month Levi was diagnosed with diabetes type 1, which had a big impact on the family.

“He [Levi] is back home and doing well but it had a massive impact on us as a family. But one again Tracy has been beside us and helped us lots to get him home with the right care package and support us in any other way. Can’t thank her enough!”

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Tracy has been beside us and helped us get him home with the right care package. She supports us in anyway we need. Can’t thank her enough!

Niki, Levi's mum

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