Little Evie’s family reach for new heights to thank charity for support

Evie Lavvaf at her home in Snettisham with her big bother Charlie (7) and parents Peter and Allison.

Evie Lavvaf at her home in Snettisham with her big bother Charlie (7) and parents Peter and Allison. Picture: Ian Burt - Credit: Ian Burt

Living in west Norfolk doesn't provide much opportunity for climbing anything much more than a modest hill.

Evie Lavvaf at her home in Snettisham. Picture: Ian Burt

Evie Lavvaf at her home in Snettisham. Picture: Ian Burt - Credit: Ian Burt

But Peter Lavvaf has decided to not just climb a mountain, but the biggest one in the world.

He will be taking on Mount Everest in September, albeit not right to the top, but a very challenging trek through the foothills of the Himalayas to base camp at 5,357m, and a summit attempt of Kalapatthar peak at 5,647m above sea level.

And as he copes with the altitude and freezing temperatures, not to mention a few obligatory blisters, his thoughts will be firmly with his two-year-old daughter Evie.

Little Evie is one of only four children in the UK and around 40 in the world to be living with a very rare genetic disorder RCDP Type-3. The condition is life limiting.

Evie Lavvaf at her home in Snettisham with her big bother Charlie (7). Picture: Ian Burt

Evie Lavvaf at her home in Snettisham with her big bother Charlie (7). Picture: Ian Burt - Credit: Ian Burt

When Mr Lavvaf and partner Allison Hipkin welcomed Evie into the world in January 2015. After a very normal pregnancy doctors quickly realised there was something wrong.

Their joy quickly turned to fear for their newborn daughter when was diagnosed with cataracts in both eyes, skeletal shortening of her limbs, a hole in her heart and respiratory problems.

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But it took eight months for the couple, who live in Snettisham, near King's Lynn, and who also have a seven-year-old son Charlie, to be told the full extent of her condition.

'There is no history of it in our family so we don't know where she has got it from,' said Ms Hipkin.

'Evie is the only known baby to be born with it without both parents being carriers.

'Her quality of life is like a newborn. She knows us and we get lots of smiles but she can't talk or walk or crawl.'

Evie still only weighs 10lbs 6oz, just over four pounds more than her birth weight, but the condition is so rare the doctors are still unsure how it may progress or how long Evie's life expectancy is.

'We know what is going to happen but no-one can tell us how long we will have with her. But we have to cope because of Charlie. We have to be strong for him but we also have to be honest with him,' said Ms Hipkin.

Their main source of information and comfort since Evie's diagnosis has been through the charity Genetic Disorders UK and the couple has decided to raise money for them to help others.

While Mr Lavvaf is in training to climb to Everest base camp Ms Hipkin and her friend Claire Warnes are organising a Ladies Night near Fakenham.

'Pete has never done anything like this before,' she said. 'Because Norfolk is so flat he has been going on a few trips to the Peak District and he is going to the Lake District and hopes to climb Snowdon before he goes off to Nepal.

'The main challenge will be walking for eight or nine hours a day for 18 days.'

* The Ladies Night takes place at the Green Park Rural Centre in Wicken Green, near Fakenham, on Friday, March 17. Tickets cost £25 and includes entertainment from a top drag queen, male strip act and food from Pizza Time.

For tickets contact Allison on 07818 802582 or Claire on 07818 802616.

* You can donate to Mr Lavvaf's Everest climb at www.justgiving.com/fundraising/EverestforEvie

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