Our family was blessed with the birth of beautiful Lily Harper in February 2021. Doctors informed us that Lily had been born with an extremely rare condition called Osteocraniostenosis. The condition was so rare that only a handful of cases had been recorded worldwide. The doctors believed Lily would leave us imminently after birth…..they were so wrong. Lily continued to fight for months on until she left us in November 2021 at Alder Hey hospital. She was the bravest little star I have ever known. Lily got her strength from her mum and dad Jonny and Clare. They are by far the strongest parents I have ever met,not a day went by where Lily wasn’t reminded how much they loved her. They taught us so much as a family,what strength was,what love was and most importantly their positivity impacted us all. Lily was transferred to Hope House and they were the biggest supporters for our family. They gave Jonny and Clare guidance of the unthinkable end of life support as parents. The facilities they have are second to none, and the care the entire team provides will stay with us forever. They make every family feel special and I know that this place has a very special place in Jonny and Clare’s heart, this is where they spent Lily’s last days until they had to say goodbye. 

Please donate and help me raise money to give back to this charity. As parents, you avoid thinking of the unimaginable of losing your child. But this charity supports families dealing with this tragedy all of the time. They rely on fundraising to make end of life care and after life care possible for families. Please help,every penny counts!