Our story

Louie and Ava are twins and were born nine weeks prematurely. At birth they weighed just 4lb 1oz and 4lbs and spent 29 days in the neonatal unit at Hull Royal Infirmary receiving specialist care.

Louie, the smaller of the two spent more time in Intensive Care and the High Dependency Unit, and was placed on a machine known as CPAP to assist Louie with his breathing but after 2 weeks, he joined his sister in the Special Care Room.

It was the most traumatic time we have ever experienced, going into Labour so early, not being able to hold your babies, and seeing them all wired up in Incubators, it was horrific. When Ava and Louie were three weeks old, we received the devastating news from the neo natal paediatrician, that routine ultrasound scans had revealed that both Ava and Louie had developed cysts in their brains, which most likely was caused by the premature birth. This was then diagnosed as Periventricular leukomalacia or PVL (a form of white matter brain injury). The doctor told us that this would lead to cerebral palsy, a condition which affects co-ordination and movement and is caused by damage to the brain. The severity of which would not be known until later on, but Louie’s injury was more extensive than Ava’s. Our world fell apart; words cannot describe how devastating this is for a parent to hear. At that point, we had no idea what lay ahead for our beautiful babies, what made things especially difficult was the fact that Ava and Louie were still in hospital. It felt for a long time like a big black cloud was following us each and every day, not knowing what the future held, but at least we had our babies, for that we are eternally grateful.

Our journey

After 29 days in the Neo Natal Department we brought our babies home to begin our journey, which was such a big thing for us. We were still reeling from the news we had received, but having them home made things so much better and we finally felt some sort of normality. From early on, we were referred to different departments such as physiotherapy, occupational therapy, portage, community paediatrician and speech and language to assist with Louie and Ava’s condition. As hard as it was finding out so early, it gave us the opportunity to begin therapy immediately.

Louie and Ava are now 6 and are both such happy, clever determined children, they melt our hearts and we have never felt love like it, they make us proud each and every day. Louie is our prince charming, flirting with all the ladies, constantly smiling and making people laugh and Ava is a cheeky little diva with a magical sense of humor and is constantly singing!

As a result of their diagnosis Ava suffers from diplegic Cerebral Palsy (affecting both her lower limbs) and Louie suffers from Quadriplegic Cerebral Palsy (affecting both upper and lower limbs) and also epilepsy.

In 2016 both Ava and Louie underwent the life changing SDR operation to permanently remove the spasticity from their lower limbs caused by their cerebral palsy and the operation for both was a huge success.

Our recent trip to St Louis, America was initially for some further intensive physiotherapy and to discuss two particular concerns we had with Dr Park. These were 1) Louie's ongoing scissoring pattern of his legs when walking, which was really preventing him from moving forward with his independence in his kaye walker and 2) Ava was still struggling when walking to get her heels down to achieve the correct pattern of heel, toe strike. Both so very key when moving forward. We had carried out so many exercises and stretches to try and stretch out both Louie's adductors (groin) and Ava's heel cords but Dr Park advised us whilst we were there this hadn't been enough. Dr Park advised that surgery to lengthen both muscles was needed. Although very daunting Dr Park advised us that Dr Dobbs (the leading Orthopaedic surgeon) was available to carry out both surgeries whilst on our trip and this took place on Tuesday 7th August.

The operations were a huge success but came at such a cost and this is why we have started our fundraising campaign once again. They have both recovered so well, a little weakness from Louie but the improvements already are incredible.

Ava and Louie continue to undergo regular physiotherapy at Hull Royal Infirmary, at home with our private physio as well as intensive physio every four months or in Essex at Kids Physio Works. This is to build their strength and achieve new milestones and continue that road to independence.

They also require various pieces of equipment now, and in the future to help in their daily lives and to give them the independence we long for.

We really appreciate all the help and donations we have received so far, we have been humbled by the generosity we have experienced.

Thank you.

Emma & Phil Elbourne x

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