Lyla

by Liam Chau

supported by
Chris Steffison
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Chris Steffison This is a really Beautiful song and a fantastic way to remember Lyla, And also sang Beautifully too, This song is already No1 in my heart and the first time a song as made me cry xxxxxxx
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about

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

lyrics

Tell me how do we go on
Through the dark now your light has gone
I'm not sure I'll ever know
Why it is, you had to go

I guess heaven couldn't wait
Heaven couldn't wait for you
Oh Lyla, Lyla, Lyla, Lyla, Lyla
Just so you know now
There's nothing that we wouldn't do

For one more day
One more hour
A minute or a second
anything would do
One more smile
Or one more kiss
We'd do anything for this
And you know that we're gonna miss you
Lyla

Taken too far from this world
But please don't you worry baby girl
'cause we'll cherish every moment spent
'till the day we meet again
Oh and I know

Heaven couldn't wait
Heaven couldn't wait for you
Oh Lyla, Lyla, Lyla, Lyla, Lyla
Just so you know now
There's nothing that we wouldn't do

For one more day
One more hour
A minute or a second
anything would do
Just one more smile
Or one more kiss
We'd do anything for this
And you know that we're gonna miss you
Lyla

But i know it's not the end
'cause after dark the sun will rise again

Oh Lyla. You. Lyla

credits

released February 2, 2014
Thanks to Ted Chau for helping me capture the moment. Thank you to the Pearsons for your permission and strength.

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Liam Chau London, UK

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