Footsteps for Louie

Thank you for taking the time to visit Louie's JustGiving page.

Louie is a cheeky chappy with a wicked sense of humour. He is constantly smiling, singing 'Twinkle Twinkle Little Star' and will do anything for a chocolate button! 

As many of you know Louie was born 8 weeks prematurely on the 26th July 2012, weighing 4lbs 4oz. After spending his first 3 weeks in SCBU (Special Care Baby Unit) we were finally allowed to take our baby home.

For the first 2 months everything seemed perfect. Louie was a happy healthy boy but began to experience severe reflux after his feeds. During his 4 month check-up the Paediatrician noticed Louie had increased muscle tone in his lower limbs (stiffness in his legs), and a tendency to arch his back when displaying emotion.

Alongside this, Louie wasn't reaching his developmental milestones. However, this is quite a common finding in premature babies so we remained patient. Nevertheless, our concerns began to grow.

At 10 months our world fell apart when we were faced with the news that Louie may have Cerebral Palsy. We were told that he may never walk unaided. Words cannot describe how devastating this is for a parent to hear. 

At that point we had no idea what challenges lay ahead for our little Lou Bear. Challenges no child or family should have to deal with. We tried our best to remain optimistic, but the not knowing was heartbreaking. After numerous requests, we managed to get Louie an MRI scan at 18 months old. Our worst fears were confirmed. Louie was diagnosed with Cerebral Palsy.

Louie had suffered a type of brain damage called PVL (Periventricular Leukomalacia) before, during, or just after birth. As a result of this the pathways, from brain to muscle are disrupted and this affects his balance and the mobility in both his legs and his left arm. 

Louie is now 2 and is an adventurous determined little boy, desperate to be on his feet. He would love to be able to join in and play with all his friends.

As a parent you would do anything for your child(ren), and our aim is to give our son the best possible chance in life. Sadly there is no cure for Cerebral Palsy but there is hope. 

Our goal is to raise £120,000 in the next 18 months to enable us to take Louie to America to undergo surgery called SDR (Selective Dorsal Rhizotomy). This will permanently reduce the stiffness in his legs, enabling him to walk independently. SDR is not a cure by any means, but is a huge step on the road towards independence. 

Early intervention is key with Cerebral Palsy so we aim to get Louie to America for surgery between 3-4 years old.

The funds raised will also go towards acquiring the equipment that will help Louie's progress, for his intensive physiotherapy programme, pre and post surgery, to ensure he gets the best results after the operation. 

Should we exceed the target amount (or if we do not raise enough funds, or if they cannot be used for any other reason) the funds raised will go to the general funds of Tree of Hope to assist other sick children.

Thank you for reading Louie's story, for your interest, and for your support.

Lucy & Nick


Follow Louie's journey :
Facebook - Footsteps for Louie
Twitter - @footsteps4louie