'I had a perfectly healthy pregnancy - then my daughter died from rare condition'

A mum who experienced a 'normal' pregnancy was left devastated when her child was diagnosed with a rare condition just weeks after birth.

Louise Cracknell, 46, had endured miscarriages before she fell pregnant with her first child, Lilian Cracknell, in 2016, but scans indicated "everything was fine." Lilian was delivered via C-section in 2017. A few months into her life, Louise, from Chester, began to notice that her daughter wasn't developing like other babies her age.

She shared how it became clear something was amiss when her friend visited with her son, who was roughly the same age as Lilian. She recalled: "They were both sitting in bouncy chairs in our house, but he was punching with his little fists and she was just sitting there. I joked at the time and said 'gosh Lilian doesn't know how to use her hands.'"

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It was following this that Lilian was diagnosed with West syndrome, a severe form of epilepsy in infants characterised by clusters of brief, repetitive spasms and a distinct EEG pattern known as hypsarrhythmia, reports the Liverpool Echo.

Lilian began to have epileptic fits that caused her to "digress." Louise explained: "Originally Lilian was moving, but as soon as she started with these fits everything stopped. She smiled, laughed, cried, all the emotions were there but she couldn't move, she couldn't do anything else."

Following Lilian's diagnosis, her parents Louise and Andrew, 57, were introduced to Claire House. Louise confessed: "At first I didn't want to accept that it is where we were. It was so daunting going there for the first time but as time went on and Lilian was progressing less and less I became more accepting of being at Claire House, surrounded by like-minded people."

Lilian "got so much" from her time at Claire House and it provided Louise with the much-needed respite she required. During this period, the family created precious memories that will forever be cherished by Louise and Andrew.

Many of these memories were made during the covid pandemic. Louise recalled: "Just before covid hit we were getting our flooring done downstairs, when lockdown came the builders dropped down their tools and left. We had no other option but for the four of us to move back in with my parents, because our home wasn't safe or liveable.

"That time was so special for my mum and dad to have time with Lilian, it wasn't too long after that she did pass away. We'd be out in the garden in the gorgeous sunshine and we made lots of videos that we will watch today. Our favourite one is an Abba TikTok we made, that everyone was doing at the time, of her and Evie [Lilian's younger sister]."

Louise added: "Lilian loved music, she would laugh and giggle along. To hear her laughing one more time..." During Lilian's life there were some "really hard days," says Louise, especially towards the end.

She remembered how looking after her daughter was a round-the-clock responsibility, involving sleepless nights to deliver constant care. She said: "No child should go through what she went through, it breaks my heart to think that she did but we did have some lovely moments. When she smiled it meant the world because you knew how much it would have taken for her to feel that happiness."

Lilian began declining following a "long session" in hospital during the pandemic. The family had journeyed to London for a "routine operation" which would enable Lilian to receive tube feeding.

Tragically, she didn't respond well to the procedure and developed a series of infections, resulting in the family remaining in London for 100 days. Louise believed everything would be "fixed" when they returned from London however, this is when circumstances became "really hard."

The family depended on Claire House to "hold their hands" and guide them through this devastating period. Sadly, Lilian died shortly after, in 2020.

The mum, who has two other children Evie, six, and Harrison, three, said: "Claire House doesn't know how much they mean to us because of the support they gave us after she passed."

She described their assistance as "invaluable" and is now working to raise awareness of the essential charity, which is fundraising towards constructing a new site. Claire House Children's Hospice, a beacon of hope for seriously and terminally ill youngsters, helps them live life to the full by creating wonderful experiences and bringing back a sense of normality to family life.

Through specialist nursing care and emotional support, Claire House brings smiles back to families when life couldn't get any tougher.

The hospice recently raised an astonishing £50,000 through its Strictly Come Dancing fundraiser. You can find out more about the fundraiser and information about Claire House, here.