Lily Bobs: raise as much as we can

Hi my name is joanne

i aim to raising money for my daughter Lily who has a life limiting illness, accompanied by special and complex needs.

The community help but not all practical, day to day equipment is provided. By raising as much money as possible, it means that we can make changes and adaptions to our home and buy equipment for Lily that she needs now.

After many yrs of trying for a baby, suffering an eptopic pregnancy and a miscarriage at 3 month, we continued with ivf to finally get pregnant with our little Lily, a very much wanted and much loved baby girl. A little sister to Grace to take around Disney. Swim in the sea, share many fun times with and for us to watch our family grow and girls shine. Sadly this isn’t the future for Lily or any of us.

Lily suffers with polg (alphers syndrome) a type of mitochondria disease that is a life limiting condition that we are told there is no cure for.

Lily was born 28/12/2021, a beautiful healthy baby ( despite jaundice and a 10 day hospital stay with photo therapy). She was such an easy, pleasant, happy baby and blossomed to be a Bonny, clever girl. Taking steps with her walker and learning to talk. Meeting all milestones with no sign of illness. December 2022 Lily had a chest infection and developed an ear infection which made her really poorly, day 5 of antibiotics she was back crawling round, playing and laughing. Then 11 days after her first birthday, on waking Lily had lost her balance once or twice thru the morning, I thought she was still tired and she had a mid morning nap. On waking she had a pincing movement in her hand which we took her to A n E, procedure for a seizure was under taken, but these medicines weren’t working. Lily was alert and communicating, had a clear CT scan. After several hours her whole body was twitching. She was incubated and taken to Alderhey childrens hospital. Lily was in icu for 10 days. She had tubes everywhere, a machine breathing for her on all types of medications to control the 6 days seizing, she was undergoing many tests. One of which was a genetic blood test. After Dad and I gave blood it resulted in that we both had the same mutated polg gene. We have two and we both had one mutated, Lily had inherited two mutated polg gene. The results where heart breaking, seizures, depletion of her mitochondria, risk of organ failures, stole all of her skills within 6 months. As a mum it has killed something inside of me, it has stole my elder daughter of all her desires of having a younger sister and all our plans as a family. Lily suffers with EPC and can have weeks of twitching, which is exhausting. We live in constant fear of the deterioration, she no longer takes anything orally and relies on a gastric tube for nutrition, hydration and medication. The list of symptoms a

nd hurt caused is endless. We just hope and pray for new medicines to become available to help Lily and having funds will help Lily to live her life with the best of what we can give her.

thank you x