Lilac's Little Legs

26 April 2022

In our next story, revealing the impact of Ardonagh Community Trust’s (ACT) work, we share the journey of Lilac – one of our first ACT grant recipients, who we supported in 2018. Lilac’s mum Leila shares how following Lilac’s premature birth she was told her daughter had Cerebral Palsy and would never walk or talk. ACT’s grant contributed towards Lilac’s life changing operation, and since then she hasn’t stopped smashing expectations.

Lilac's Little Legs

As told by Leila Jackson

All three of my children were born prematurely and when I gave birth to my middle child, Lilac, at just 34 weeks, she was not expected to survive the day. She had developed sepsis and her organs were beginning to fail. At 25 hours old she was transferred to Kings College Hospital in Central London and I had to discharge myself from the maternity unit so that I could be with her in the ambulance.

When my husband and I arrived at the hospital with her that night we were met by a doctor who told us that there was no place for us to be on the ward and they needed to stabilise her – the best thing we could do for Lilac was to go home. I will never forget that feeling of dread and the sound of rain on the car roof as we drove away from our critically ill daughter that night.

 We returned at first light to a busy hospital. We couldn’t wait for the lift to come so we charged up the stairs to see our daughter. The doctors told us about accommodation for parents provided by The Ronald McDonald House Charities and my immediate thought was that she was going to die. I couldn’t stop thinking about the pushchair that was waiting for her at home in the hallway. I felt I had somehow made all of this happen by buying the pram too early.

During the next few days Lilac began to rally and at two weeks old we were finally able to bring her home. She was a wonderful, bright, little baby but we began to notice that she was different to our first child. She seemed very stiff in her legs and she wasn’t sitting or crawling – she was falling behind in her gross motor skills. At that time, I was in complete denial and wanted to believe this was simply due to her prematurity rather than an underlying issue. I felt that if she could just have more time to catch up to her peers, if she could reach that special milestone of taking her first steps, everything would be ok.

When she turned one, Lilac was referred for genetic tests, including one for muscular dystrophy, and was also referred for an MRI scan and a neurology appointment. The genetic tests all came back clear and the doctors at the clinic were able to diagnose Cerebral Palsy on examination. The MRI later confirmed her diagnosis. We were told that she would never walk or talk – we should just take her away and love her. As her parents we couldn’t accept this prognosis for our beautiful daughter who had already overcome so much.

We began our research and discovered an operation and a programme of intensive rehabilitation that had helped other children in Lilac’s situation. Then we discovered that the operation was not available on the NHS and it would cost £100,000 to fund the treatment she needed. We were also in a race against time – her operation needed to take place before she started school for it to have the best results. It was an overwhelming position to be in as we were starting from a complete standstill, but we were absolutely determined that we would make this happen for our daughter. So, we got our heads down and set about fundraising for Lilac and making sure that everyone far and wide knew about our cause. We set our sights on our ultimate goal – for Lilac to walk into school on her first day.

At that time, before joining The Ardonagh Group myself, a friend of ours was working at the Towergate Cheltenham office and had talked to us about putting in an application for a Community Grant from ACT. We leapt at the chance and he applied for £5,000 to help towards our target. We were contacted by the charity a short time after and were overjoyed when we were offered a grant to help fund Lilac’s treatment.

Lilac was three and a half when she had her operation and within three weeks she was beginning to stand independently for the first time in her life. Words cannot describe our feelings when she took her first steps just six weeks later. In September 2019, we had the incredible privilege of watching our daughter as she walked into school on her own. 

We want people to see children like Lilac for who they really are. She is so much more than a diagnosis and does not need anyone’s pity. We want her to have access to every opportunity. There’s nothing she can’t do and nothing she won’t try. Lilac is the most sociable little girl and she talks for Great Britain. She goes horse riding and swimming, to a theatre school – she lives a very full life.

Lilac has given me a strength and a purpose that I would not have had without her. At the very heart of Lilac’s story lies hope. We were told so many times there’s absolutely no hope, but we never gave up and neither did she. There are of course challenges and bad days. Her life will always be different, she will likely always need orthotics to support her walking and as she grows she will face new difficulties, but I still believe that ours is the most beautiful journey. 

Without ACT we would not have been able to get the treatment and support Lilac so desperately needed. Not only did the grant help us afford her operation, but we were able to contribute to her intensive rehabilitation and she is also able to attend a specialist residential strength and conditioning camp which ensures she stays in top physical shape so that she can reap the benefits of her treatment.

The icing on the cake for me is now working for the charity that helped us get to this point and each quarter being able to give other people the good news that we’re able to help a cause they care about through this programme. 

I want to say thank you to you all for believing in Lilac in the way that we believe in Lilac. We know that it takes a village to raise a child, and everyone who has supported us, has had a hand in helping her to become the bright and brave child she is today. We could not have done any of this without the love and hope of all the people who were rooting for her and we are grateful to everyone who filled our world with so much love. 

Lilac’s parents continue to campaign and advocate for children like Lilac by sharing their experiences and offering advice and support through their social media pages. For more information please visit Lilac’s Little Legs on Facebook and @Lilacs_Little_Legs on Instagram

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If you have any questions, reach out to the ACT team using info@ardonaghtrust.org.