I thought my girl was possessed when she ate candles & landed her teachers in A&E – but new diagnosis has given us hope
FOR most parents, every day can bring a new challenge.
But for Rhoda and Stephen Woodburn, each minute with their 13-year-old daughter Beth can be unpredictable.
The youngster, from Newtownards, Co Down, will happily try to eat dog poo, climb the curtains and scream for hours on end.
But when Rhoda, now 42, took her to see a doctor as a baby she was told it was her fault for having her children too soon after each other.
Beth's behaviour became so distressing that the couple were convinced their daughter was possessed.
At her worst, she became the youngest child in Northern Ireland to ever be sectioned under the Mental Health Act.
Ultra rare
It was only last year that they finally got an answer as Beth, now 13, was finally diagnosed with a rare condition called FOXG1 syndrome.
It is a rare neuro-developmental disorder caused by a gene mutation and is thought to affect just 230 people worldwide.
The diagnosis meant Beth could be weaned off some medications and given more specific treatments to control her symptoms.
It's meant she is now being affectionate towards her family for the very first time.
“A few months ago she ran over to my mum and sat on her knee,” says Rhoda.
“I’ll never forget her reaction. She burst into tears, saying she’d waited 13 years for a cuddle from her granddaughter.
“We’re finally seeing Beth smile. She gets this twinkle in her eye that lights up the room.
"She’ll always need 24-hour care, but now she’s holding our hands and kissing us, it makes all struggles worthwhile.”
Born different
Rhoda says she knew her daughter was different as soon as she was
born.
“She cried for the first 16 weeks, solidly,” she remembers.
“And I mean solidly, 24 hours, day and night. We were at our wits' end - I had a one-year-old, my son Calum, too.
“Our GP actually blamed me and said I’d had them too close together and couldn’t cope.”
As Beth started to miss her milestones, she was diagnosed with severe autism, ADHD and epilepsy, but even those conditions couldn’t explain her behaviour.
“Our lives were crazy,” says Rhoda. “Stephen had to give up work because Beth needed round-the-clock care.
"The health service said she was the most complex child they’d ever seen.”
As Beth grew, her behaviour became more and more challenging.
She was suspended from her special needs school after lashing out and
landing members of staff in A&E.
“She doesn’t sleep, so we only ever get a couple of hours a night,”
explains Rhoda.
“She can’t be left alone. She climbs the curtains, runs along the window sills, pulls things out of drawers.
"Still in nappies, she wets the bed several times a night, meaning I have to get up to change her.
“Our house is so bare. We can’t have anything out. No plants, candles
or photo frames… Beth would just eat them.
"In fact she’ll eat anything – if we take her to the park she tries to eat dog poo.”
At their “wit’s end”, Rhoda and Stephen called for help from their
minister.
“People thought we were bad parents,” says Rhoda.
“Because Beth looks relatively normal, people would see her making a fuss and think it was our fault.
"We’ve had so many stares and dirty looks – people judging us.
“She wouldn’t even let me brush her hair or clean her teeth, so most days she charged round looking like the Wild Woman of Borneo.
“I remember catching my younger daughter Eva, 11, standing in front
of the mirror and saying she wished she had a sister to play with, and
put on make-up with. I had to take myself to my room for a cry.
“Calling our minister was the only thing left that we could think of.
"Honestly we thought she could be possessed, so he came to our house and prayed over her.”
Heartbroken
After being sectioned for her own safety when she was just nine years old, Beth spent 18-months in a secure mental health unit.
“It absolutely broke our hearts,” says Rhoda. “Imagine being told you
can’t care for your own child.
"We have three other children who are perfectly well-behaved, well-mannered and helpful.
“But Beth was something else. Nobody knew what to do - not us, not
her doctors, nobody.
Imagine being told you
Rhoda Woodburn
can’t care for your own child
“I visited her every single day, finding her either comatose on tranquillisers, or as manic as she’d ever been, terrorising the staff.
"We began to fear she’d spend her whole life institutionalised.”
The turning point came when Beth started having seizures in hospital and was referred to a neurologist.
It was then that she was finally diagnosed with FOXG1 syndrome.
What is FOXG1 syndrome?
FOXG1 syndrome is a rare neuro-developmental disorder caused by a mutation of the FOXG1 gene, which impacts brain development and function.
This severe condition is characterised by seizures, inability to control body movements, and lack of speech.
While the spectrum of abilities is quite broad depending on the exact genetic mutation, many of our children cannot walk or talk, and they struggle to communicate their most basic daily needs.
It is possible for parents to be carriers, but most cases of FOXG1 are non-inherited and have no family history.
There is no cure for the FOXG1 syndrome, but with medications, physical and speech therapy and nutritional support to help manage symptoms and prevent complications, a stable quality of life can be achieved.
Source:
This incredibly rare condition explained Beth’s behaviour, including
her sleeplessness and love of eating non-food items.
With a diagnosis, the family were able to begin working towards changing her medication to calm her down.
“These days Beth is still challenging, but she’s a lot easier,” says Rhoda.
“She’s affectionate to us. For the first time ever, we actually believe our daughter does love us.
“Now we try to enjoy her quirky behaviour. Her love of horrible smells is so funny - in church she will walk along the aisle sniffing all the men’s feet!
“Stephen smokes, and she loves to get really close to him when he has fag breath.
“The support we’ve had from our community has been incredible.
"We know that Beth will need 24/7 care for her whole life, so we just take things one day at a time and celebrate the little things, like a smile or laugh.”
Rhoda has been so the family can go on outings together, as well as cash for other items to make Beth’s life easier.
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“Although Beth can walk and run, she’s not safe in public because she runs off or tries to eat things,” she explains.
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“It makes family outings with our other kids very difficult because she can be a danger to herself and others.
“We just want to give our special daughter the best quality of life
that we can."