When Morgan Rachal’s daughter was born in October 2022, doctors told her she’d given birth to the ‘perfect baby.’
Besides a few ‘normal’ newborn ailments, such as constipation, ear infections and restless nights, Morgan, 33, believed that her daughter, Lydia, now three, was completely healthy.
‘I had the perfect pregnancy and birth’, said Morgan, from Louisiana, USA. ‘I wasn’t looking at anything wrong. I was never worried about anything.’
Morgan says the first 18 months of her daughter’s life were ‘full of happiness,’ but a TikTok video changed everything.
Morgan’s mum sent her a short clip, featuring a child who looked almost identical to Lydia, with the same thick eyebrows and full lips.
‘It could have been her twin,’ said Morgan. The TikTok video told the story of a little girl with Sanfilippo syndrome, a rare disorder which is characterised by certain facial features, such as heavy eyebrows and full lips, and excessive hair growth.
But shockingly, the condition is widely referred to as ‘childhood Alzheimer’s’, as it can cause developmental regression and a subsequent loss of skills, mimicking the disease found in older people.
‘I see, “terminal illness” and all the symptoms that went along with it,’ says Morgan. ‘It was unreal.’
Horrified, Morgan took her daughter to the doctor, and showed them the video.
While the doctor said he’d never seen a child with the condition, he agreed to refer Lydia for tests to ‘rule it out’. A week later, Morgan’s worst fears were confirmed: her daughter had Sanfilippo syndrome.
Morgan said the family were ‘plunged into a dark place’. She shares: ‘I felt like the life got sucked out of me. I felt like I couldn’t breathe — my life was at a standstill. I had that instant feeling of “my baby is going to die.”
‘She won’t be able to walk or talk. She won’t make it through the third decade of life.’
Tragically there is no cure — and right now, Morgan and her husband, Kirk, are trying to make the most of the time they have left with their daughter.
Kirk says: ‘She loves her Mama the best. She loves playing with her chickens and riding her little tractor. She loves music. She likes playing basketball.’
But by three or four, it’s likely that Lydia will start to regress. In particular, Morgan and Kirk worry about the impact it will have on the bond Lydia shares with her sister, Heidi, six.
Morgan said: ‘I watch them play together, and what life would be like, if only she could get some treatment before the brain damage begins.’
There are currently limited treatment options available for Lydia — but alongside 14 other families in the same situation, Morgan and Kirk are determined to try and get help.
The group are working with the Cure Sanfilippo Foundation, who suggested Lydia take part in clinical drug trails. Lydia’s body is missing an enzyme, that ultimately causes the condition to occur, but there is a trial available that aims to replace this missing enzyme, with artificial ones produced in a lab.
However, the trial comes at a staggering cost of $6 million (£4.56 million), which the family are hoping to raise the money for via GoFundMe by spring 2026.
To date, Morgan and the other families have raised $1.6 million (£1.2 million) towards their cause, and remain ‘hopeful’ that the drug will be approved for use in the US and that they’ll be able to undergo it in 2027.
‘I am so hopeful that Lydia and the other children will get this treatment,’ Morgan says.
‘This is our last chance to save our daughter – and I am so grateful for everyone who is helping.’
Other symptoms of Sanfilippo syndrome
- Delayed speech
- Behaviour problems
- Sleep problems
- Developmental regression
- Seizures
- An enlarged head and tongue
- Difficulty with communication and social skills.
Source: Boston Children’s Hospital.
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