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 3 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 will do anything for milky buttons! Ava is a cheeky little diva with a magical sense of humor and is constantly singing! But they are noticing now they are slightly different and can’t do what other children are doing their same age, it breaks our hearts.

Diagnosis

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. Ava can use a little Kaye Walker but needs constant supervision and Louie is able to sit independently but needs constant support for all mobility.

As a parent you would do literally anything for your children and our aim is to give both our son and daughter the best possible chance in life. Sadly there is no cure for Cerebral Palsy but there is hope.

In August 2015 Ava and Louie were both referred for assessment for an operation called Selective Dorsal Rhizotomy (SDR) on the NHS. This operation permanently reduces the stiffness in the lower limbs, by cutting nerves in the lower spine, giving a better chance of independent walking.

We received mixed news, Ava was accepted through the NHS to have this pioneering surgery in January 2016. However, unfortunately Louie was declined as he didn’t meet the NHS Criteria. It was such a horrible but fantastic day, given the news that your daughter has been accepted for this life changing operation, but not your Son.

Our challenge

As any parent, we want the best for our children, and our goal is to raise funds within the next year to enable us to take Louie to America to undergo the same surgery his sister has been granted here in England. The funds raised will also go towards acquiring the equipment that will help both Louie and Ava’s progress for their intensive physiotherapy programme including equipment post and pre surgery to ensure they both get the best results after the operation. We would also like to purchase specialist trikes.

We will never give up our fight, and believe Ava and Louie can continue to achieve goals to give them the opportunity to lead as normal, and independent life as possible.

Thank you for reading Louie and Ava’s story.

Emma & Phil Elbourne (Mum & Dad)

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