Hi everyone,

just wanted to update that the money from the last amount raised has been given to Sma uk and used for summers spinal brace , we are incredibly grateful for everyone’s kindness it means the world to us , we have come across some amazing equipment that would be amazing for summer and really help her , so we are still trying to raise funds to get summer more equipment, thank you so much to everyone that donates , shares her page ❤️❤️

Our Daughter Summer has spinal muscular atrophy type 1 ,

At the age 5 months summer become very floppy couldn’t move her legs , had no head strength and very limited movement in her arms and at nearly 6 months summer got her diagnosis of SMA Type1 , as a family this really broke our hearts that this was happening to our little girl , and it was such a lot to take in .

Spinal Muscular Atrophy is a rare, genetic neuromuscular condition characterised by muscle weakness and atrophy due to progressive loss of motor neurons. SMA is caused by a mutation/deletion of SMN1 (Survival Motor Neuron 1) gene. SMN1 gene is responsible to produce a protein called SMN (Survival Motor Neuron). With insufficient amount of SMN protein, the motor neurons start to die. SMA type 1 is the most common and severe form and without treatment, the life expectancy of babies with this type is around 2 years.

We were extremely lucky that summer was able to have life saving treatment zolgensma gene therapy, this isn’t a cure but it stops the condition progressing.

By the time summer was diagnosed she was very symptomatic, we are very grateful we were able to have the treatment on the NHS but unfortunately the aftercare just isn’t good enough to help summer and other children with Sma,

my wonderful mum is doing a sky dive in June to raise funds for Sma uk an amazing charity that advocates for children and adults with Sma and helps families , my mum is also raising funds to help with summer needs to give her best possible life she can have living with Sma

Summer needs weekly physio at a minimum which costs 90 pounds an hour these sessions are tailored to summers needs and to help her build her muscles, and are crucial to helping summer progress as much as she can , physio is so important to summer and we want to be able to take her to physio as much as we can to work on her strength ,

spinal bracing to help slow down her scoliosis which costs £2000 approx and she needs a new brace yearly at the moment

we would love for Summer to be able to do intensive physio therapy courses that have been proven to really help children with Sma

and different equipment to help summer to be independent as possible.

as parents we want to give summer the very best to help her with living with spinal muscular atrophy but everything is very expensive and where we do our absolute best sometimes this isn’t always possible to do it all and fund it all ourselves .

Summer has been through so much already endless hospital trips , working extremely hard to do simple things like holding her head up as best as she can , physio that is so important for her but makes her extremely tired , but she’s always got a smile on her face and is a true fighter.

my mum doing this sky dive for Sma uk and summer means the world to us and it’s a big deal to my mum who is scared of flying and heights summer adores her nanny and we are so thankful that summers nanny is doing this for her and Sma uk.

the money raised will be shared with Sma uk and Summer for all her physio & equipment needs .

thank you for taking the time to read and to anyone that is able to donate

we thank you so much and forever grateful xx