All proceeds go to Lyla's Fund.
This song was written for a very special little girl, here is her story:
Lyla passed away when she was just one year old. She was born on the 6th of January 2013 at Dewsbury hospital weighing a heathy 8lbs 13oz. Lyla was born with bilateral talipes and clasped thumbs but gave us no reason to believe she could be seriously ill. We became concerned about Lyla when she was 6 days old and we were unable to wake her up for a feed. She was admitted to the children's ward at Dewsbury Hospital and the paediatricians informed us that Lyla appeared to have a genetic syndrome. As Lyla grew it became clear that she would need more help than most babies. She had an ng tube inserted for feeding and she required physiotherapy due to her poor muscle tone. Her feeds were thickened due to her severe reflux and she received speech, language and play therapy to help with her development.
We were so pleased when Lyla started smiling, reaching for objects and looking at toys. She loved cuddles, her dummy and would happily lay on her play mat with her sensory toys. She had an amazing cheeky grin and a very loud cry! Genetic tests did not reveal why Lyla had a development delay but we were optimistic about her future.
Our dreams were shattered when at four months old Lyla developed infantile spasms. It was devastating to watch our small baby have so many seizures and the intensive anti epileptic treatment took away her beautiful smile and our happy baby. Unfortunately for Lyla the treatment was unsuccessful and the spasms returned a few months later. Lylas epilepsy was unresponsive to medication and she spent most of the summer in hospital. An MRI scan showed that Lyla's brain was deteriorating and she slowly lost her vision and her movement became even more limited.
It was at this point that Lyla's doctors told us that she would have a very limited life span and we were introduced to the team at Forget Me Not hospice. No parent wants to be told that their child will be given palliative care or should have to think about how they want their child to pass away but Forget me not were there for us at every step. They have given us respite care at home and overnight care for Lyla at the hospice. They made it possible for Lyla and her sister Eva to go swimming in their hydrotherapy pool and they have given us precious pictures of them taken at their Christmas party.
Lyla was rushed into resus on the 22nd of January and we were told that there was nothing more that they could do for her. The first thing I asked was for her to transferred to the hospice. Lylas last days were not spent in hospital on a noisy ward, she was kept comfortable in a cosy cot. We were able to cuddle Lyla in a peaceful environment while a carer made cookies with Eva. Lyla's passing was so peaceful and she slipped away in her sleep just as we hoped.
Please visit Lyla's memorial page here: littlecoconut.muchloved.com
Please donate to the "Forget Me Not Children's Hospice here: www.justgiving.com/Lyla-Pearson/?utm_source=Facebook&utm_medium=fundraisingpage&utm_content=Lyla-Pearson&utm_campaign=pfp-share-mobile
Thank you for your time and care.
R.I.P. Lyla. Xx
released February 2, 2014
Thanks to Ted Chau for helping me capture the moment. Thank you to the Pearsons for your permission and strength.