“If love could’ve saved her, she would’ve lived forever”
A mum has issued a heartbreaking tribute after her four-year-old girl who “stole hearts wherever she went” died unexpectedly.
Alba Brown suffered a brain injury after being born prematurely before being diagnosed with cerebral palsy and later a rare digestive condition.
Her mum Liv Brown, 30, remembers her as the “smiling little girl” who “lived life to the fullest”.
Alba tragically died on July 23, after her condition began to worsen shortly before she had been due to enter Claire House Children’s Hospice, in Merseyside.
Never miss a story with the MEN’s daily Catch Up newsletter – get it in your inbox by signing up here
Liv told the Liverpool Echo: “She was cheeky. She knew exactly what you were saying. For someone that couldn’t talk, she communicated with you.
“She was quite wild. She loved being thrown about. She used to go on loads of days out.
“We took her to Turkey last year after the diagnosis. She lived life to the fullest. She was always on trips or weekends away.”
Alba, from Kirkby, had a periventricular leukomalacia (PVL) bleed on her brain – a type of brain injury that involves damage to the brain’s white matter which is often seen in premature babies.
PVL can lead to cerebral palsy, developmental delays and other neurological issues. Alba was diagnosed with cerebral palsy.
She spent the first two years of her life in hospital. Then in February of last year, she was diagnosed with gastrointestinal dystonia, a condition affecting children with severe neurodisability which impacts their ability to digest food.
According to the NHS, dystonia is the name for uncontrolled and sometimes painful muscle movements (spasms).
It’s usually a lifelong problem, but treatment can help relieve the symptoms. Gastrointestinal dystonia is a rare form of the condition when symptoms become debilitating and potentially life-limiting.
Last month, shortly before Alba was due to enter Claire House Children’s Hospice, her symptoms worsened – but Liv never expected her daughter to die so soon.
She said: “Last year in February, she was diagnosed with gastrointestinal dystonia, which leads to gut failure. She was fed through a small bowel because her stomach didn’t work.
“Kids with that condition can live for months to years. Recently, she had been having really bad episodes with her stomach, so we’d all been trying new and different medications with the palliative care team.
“Every Friday she got a rest day where she wasn’t fed at all, it was just water for 24 hours. Just before she went into Claire House, she had a really bad few days where she wasn’t even tolerating water. Her hands and feet started going cold and the doctors were worried about her.”
After receiving treatment on Tuesday, July 15, Alba was taken into Claire House. Liv said: “They told me it could be hours or days, and she ended up going another eight days. She passed away on July 23.
“It all happened quite fast. I didn’t think she was going to die anytime soon. I thought maybe next year or the year later, but it was quite a shock.”
Liv is grateful for the memories she made with Alba, along with her two brothers Anthony and Jaxon, step-brother Sean and two sisters Oona and Orla.
A GoFundMe was set up by Liv’s friend shortly before Alba’s death to raise money for her funeral. She has been comforted by the £11,000 in donations they have received so far along with the many messages of support.
Liv said: “Alba’s got a big family, so it’ll go towards the cars and the after party. We want to give her the best party because she never really had a birthday party.
“She’s never going to have an 18th or anything like that, so we just want it to be the best party she’s going to have.
“Everyone who met Alba fell in love with her and you can see that by everyone’s contributors, which means the world to us. Everyone loved her. She had a full community beyond her.”
Liv added: “From the moment Alba entered this world, she filled our lives with a love beyond words. In her four precious years, she taught us the true meaning of joy, strength, and courage. Though her journey was far too short, it was one of pure love, and every moment with her was a gift.
“She will be remembered always for her gorgeous, cheeky smile that could brighten the darkest day, for being the “best dressed” little star wherever she went, and for the incredible strength she showed throughout her journey. She was the happiest little girl, and her light will continue to shine in all who knew her.
“To everyone who surrounded us with love, kindness, and support please know that it will never go unnoticed. I am forever grateful for every hand that held ours, every heart that shared our love for her.
Join the Manchester Evening News WhatsApp group HERE
“My darling girl, she saved me in ways I didn’t know I needed saving. She gave my life purpose, laughter, and a love so powerful it will never fade. My life will never be complete without her, but she will live on in my heart forever.
“I feel so lucky to have called Alba mine, to have been her mummy. She was my everything. Since the day she was born she has taught me more than I could’ve ever imagined.
“She stole hearts wherever she went. Every person who met her fell in love with her, and that made me the proudest mum in the world.
“It was always me and Alba against the world. If love could’ve saved her, she would’ve lived forever.”
You can find out more about the GoFundMe for Alba’s funeral here.