4 years ago, in May 2015, our beautiful daughter, JoJo was born. She was tiny and wonderful but in the early hours of the morning, I woke to a midwife telling me she needed to take JoJo out of the room to check on her.
Our happy newborn bubble changed in seconds, as JoJo was rushed away and hooked up with dozens of tubes to bleeping machines. The next hours, days and weeks, her life hung in the balance. She was rushed 2 hours away to Plymouth NICU unit, where after stabilising, she suddenly and rapidly deteriorated hours later again just as we thought things were getting back on track. We will never forget the terrible moment a nurse knocked on our hospital room door just before midnight, and quietly told us we should come and see our daughter to say goodbye.
The head paediatrician that night took us to his office and said that there was nothing more they could do for her. He then said that at this point, many parents made the choice that their child had been through enough. Did we think this? There was one other option he said - for JoJo to be transferred to a specialist heart & lung machine of which there were only 4 in the country. However, even if there was one available, it was a very limited hope and there was a huge number of obstacles she would have to survive to make it happen.
Myself and my husband looked at each other and there was no question in our minds - we couldn’t let our daughter go without a fight.
And JoJo fought. All 5lb 4oz of her fought - and somehow, against all odds stacked against her tiny self, she proved every professional wrong and survived all that was thrown at her in those first 6 weeks of her life.
6 weeks, 4 hospitals, an emergency helicopter flight, a huge operation and weeks of intensive care.
We realised that our little girl must have something important to do - and she had the determination to make sure she was here to do it. We were almost out of the woods when some more test results came in and we discovered that JoJo had something else to battle - a rare and lifelong genetic condition called Prader Willi Syndrome. WHAT IT MEANS
PWS affects all aspects of her body - her muscle tone, her strength, her speech, her communication, her understanding, her movement, her behaviour, her temperature regulation, her ability to feel pain, and most scarily, it will make her always feel hungry.
What it doesn’t affect is her personality - she is the funniest, happiest, most sociable, affectionate, loving and beautiful little being that you could wish to meet.
What we don’t ever want PWS to affect is JoJo’s ability to live a full and happy life where she can believe and achieve everything she hopes and dreams.
It certainly isn’t the easiest path that our family now has to take, but we will always strive to give her the very best opportunities.
We have saved and fundraised before to enable us to take JoJo for various therapies, including intensive physiotherapy blocks in a specialist centre in Oxfordshire, as well as to help us to afford weekly private physio sessions at home. OUR FIGHT
JoJo is due to start school this coming September 2019. She was granted a place at our local mainstream Primary school where her big sister, Sunny, has been so excited to finally have her there too. However, if JoJo isn’t able to walk independently, then this dream can’t come true. She would have to attend school in a wheelchair as the staff are not able to assist her with walking as we can at home. Sadly, unchangeable access issues make this impossible. OUR AIM
We know that JoJo will walk, run and do all of the things we dream for her - but she needs our help. Over the coming months we want to change our family’s life by saving & raising the funds to enrol her in the best intensive therapy we can find, including the NAPA Centre
so she is finally able to take those first magical steps on her own. (Look out for updates on the events we are planning).
Our dream is to watch her and Sunny walk hand in hand through the school gates by September 2020 - we will make it happen. #getjojowalking