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On 12th July 2014 Lennon and Layla arrived at just 28weeks gestation, weighing 2.10lb and 3lb. Both were admitted to the Neonatal Intensive Care Unit (NICU) where they remained until they were strong enough to be moved into the Special Care Baby Unit, some five weeks later. Lennon spent a total of seven weeks in hospital with Layla staying for ten weeks.
During their time in the NICU both Lennon and Layla were subject to regular body scans to check that their tiny organs were developing correctly. It was as a result of this that we were advised quite early on that ultrasound scans for both Lennon and Layla had shown that they had developed bleeds to their brains. Layla has been diagnosed with global development delay and a recent MRI scan has confirmed that Layla has PVL (damage to the brains white matter). Layla's consultant has stated she has mild cerebral palsy primarily affecting the left side of her body.
After an appointment with a geneticist from GOSH we learned that Layla has a chromosome 6 deletion. This is an extremely rare genetic disorder in which some of the genetic material that makes up one of the 46 chromosome – specifically chromosome 6 in this case – is missing.
There are less than 100 reported cases in the world of a chromosome 6p deletion and Layla has the only reported case of the genetic strand that is missing in this case in the world! She is unique. GOSH have advised increased therapies to allow Layla the opportunity to achieve her maximum potential in all areas.
Lennon's consultant has stated that he has cerebral palsy affecting his lower limbs-spastic diplegia.
He recently travelled to St Louis in USA and had the SDR operation which helps to minimise the tightness in the muscles in his legs. The recommended aftercare and physiotherapy for Lennon are private sessions at least four times a week at a cost of £75 a time.
Our fundraising is pay for the therapies needed to continue to help and achieve the best life possible for Lennon & Layla.
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Suzan Kiamil started crowdfunding
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Aug 10, 2018
Thanks John Xx
Aug 7, 2018
Thanks Geoff Xx
Aug 6, 2018
Well done Suze! John & Francis X
Aug 3, 2018
I am so proud of you for doing this. Amazing achievement and an amazing cause. Well done hunny x love from us all. X
Aug 2, 2018
Sorry it isn't much but every little helps xxx proud of what you done and you done it for an amazing charity XX
Aug 2, 2018
Thanks Ricky xx
Aug 2, 2018
Thanks Auntie Elaine Xx
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About the fundraiser
Thank you for visiting my Crowd Funding page to donate to an amazing cause! I am doing a skydive on August 1st 2018 for Lennon & Layla. I believe that all donations can make a huge difference & I chose this charity because I would like to see the impact our donations can make!
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