First birthday joy for Burnley's 'amazing little fighter' born with a rare condition that affects only one in 100,000 children

A baby boy, who was born with a rare condition that affects only one in 100,000 children, will celebrate his first birthday next month.

Tuesday, 11th May 2021, 4:20 pm

And the doting aunt of brave little Jake Macaree who suffers from Lissencephaly, a set of rare brain disorders where the whole or parts of the surface of the brain appear smooth, has launched a fundraising campaign to help create a specially adapted garden at his Burnley home.

This is so Jake can enjoy time outside with his big sister, Lilly who is three, and their parents Lauren and James.

So far, Alex Hoban, has raised £1,050 towards her £2,000 total.

The Macaree family with baby Jake when he was born (photo by Memory Boutique Photography)

She said: "Jake is a little superstar who already in his short life has fought so much and taught us about what really is important and made us all look at life with a different perspective.

"Lauren and James do an amazing job caring for Jake and I'd like to give back a little something to them."

The money raised will be put towards making the family garden wheelchair friendly and also build an enclosure for the hot tub James' friends raised money for.

Alex said: "This is a place which both Lilly and Jake will be able to enjoy and hopefully lots of memories can be made."

Little fighter Jake Macaree is one next month

Alex, who is Lauren's sister, is also appealing for anyone to donate time or materials to the project.

Lauren said they had been blown away by the fund raising campaign and the generosity of people.

She said: "Alex is just amazing, such a selfless person and she has been wanting to do something to help us for so long.

"It would mean so much for us to be able to take Jake into an outdoor space that he can enjoy safely with us."

Lauren with her sister Alex who is fundraising towards transforming the family garden into a safe space for Jake

Jake arrived in the world in June last year, just three weeks after doctors had to break the devastating news of his condition to Lauren. She had to be induced at 37 weeks.

She said: "Due to covid I had to attend appointments alone so when they told me that Jake had an abnormality in his brain it was almost impossible to take it in at first, it all seemed so surreal.

"It was absolutely devastating news to hear so far into my pregnancy, we thought everythiing was fine."

Lauren had been attending regular hospital appointments as one of her first scans detected protein in her placenta. And when doctors carried out a check at 34 weeks they made the discovery about Jake's brain conditions, ACC and ventricularmegaly.

Lauren added: "I can't describe how devastated we felt but worse was to come as it wasn’t until Jake was born they discovered he had Lissencephaly and EIEE which is a type of epilepsy."

Within three minutes of being born Jake suffered a seizure and he was rushed to NICU at Burnley General Hospital where he spent the first three weeks of his life. At three days old little Jake underwent an MRI scan and at just under a week old an EEG.

"The hospital told us to take Jake home and just give him lots of cuddles and love," said Lauren (34)

"No-one can tell you the life expectancy of someone with Lissencephaly, so our time with Jake is so precious.

"I have lost count of the number of times we have been back to the hospital with him after a prolonged seizure or chest infection but each time he so strong.

"He is an amazing, beautiful little boy and a real fighter."

The couple found out as much as they could about Jake's condition and have found strength and support from a series of support groups on social media set up by the families of children with Lissencephaly,

Lauren said: "At first I just couldn't face it but James, being the researcher, threw himself into finding out as much information as he could to enable us to give Jake all the support we could.

"I relented eventually and the support we have received has been absolutely fantastic, I call them our 'Liss family' now.

"It is so good to know that there are people who know exactly what you are going through and how you feel."

Lauren, who has taken a career break from her job as an office manager to care for Jake, has thanked James, a managing director, for being her rock who she could not walk this journey without, her mum Deborah and family and friends for the tower of support and strength they have shown to the family since Jake's arrival.

She added: "I feel glad that Jake came to us because has a loving family to take care of him when so many children are not so lucky.

"Jake is a blessing in our lives, he has taught us so much in such a short space of time.

"And at the end of the day he is our son and we will do everything we can to help make his life better."

Anyone who would like to make a donation to Jake's garden fund is asked to click HERE