3 days ago
‘My disabled child will need PIP for life – I fear what will happen when I die'
Welfare reform is a hot topic, as the Government considers whether to cut benefits for the disabled. But, while politicians wrestle with their balance sheets, one mum tells what it's really like to bring up a child with a disability
Born with the rare genetic disorder FOXP1, writer Kate Skelton's daughter Annabelle, 10, receives Disability Living Allowance which at 16, would have transitioned to PIP – one of the benefits under threat.
Here, Kate 43, who lives in Bromley, Greater London, with her NHS worker husband Philip 44, twins Alexander and Oliver, 6, son, James, 13, and Annabelle, reveals how just two weeks ago she met other children like her daughter for the very first time.
Two weeks ago Annabelle and I boarded a flight to Amsterdam. A life changing moment, it was the first time we'd ever met a child like her and the first time in 10 years I've felt like I belonged .
You see, Annabelle is one of only 652 people worldwide diagnosed with Forkhead box protein P1 syndrome (FOXP1) - a rare neurodevelopmental disorder, causing cognitive, behavioural and physical challenges.
It has resulted in her having cerebral palsy, autism, ADHD, global development delay, hypotonia and challenging behaviour. I am in awe of Annabelle's determination, fearlessness and resilience.
She has defied expectations. She can walk, dance and ride a bike. Although mostly non-verbal, she can talk in simple sentences, she sings beautifully, she gives the most amazing cuddles and has a smile that lights up every room.
She is learning to colour in and is learning to read simple words. She has an amazing laugh and sense of humour, she is funny, kind and patient.
She also faces immense challenges – physically and mentally – and, as her family, with no one who truly understands to talk to, until now, so have we.
It's not just Philip and me, either. Her brothers are impacted – they're always looking out for her, making sure she is safe.
But now, in Amsterdam at a special conference for FOXP1, we were connecting with families like us from all over the world - even the UK. Meeting them and their children, I cried tears of joy. It had taken us a decade and we'd had to fly across Europe but, finally, it was like the pieces of our jigsaw were slotting together.
After 10 years of me feeling lost, afraid and alone, we were part of a community.
I couldn't believe it when we met Zahra, from Hampshire, with her 13-year-old boy Oscar, who has FOXP1 and was diagnosed three years ago – six weeks after his dad died suddenly and unexpectedly.
Her feelings echoed my own, when she said: 'Finally meeting other children and adults with FOXP1 and their parents and carers was the best decision I've made.'
When Annabelle was born on 23 December 2014, I knew something was wrong. She had a squint and was floppy. She had a strange cry – and while her head was on the 90th centile, her body was on the 9th. She choked on my milk and didn't make eye contact.
But I could never have imagined the journey that lay before us – the hospitalisations, the battle for therapy and support, the loneliness and isolation, the fears for her future that would keep me from sleeping.
As she continually missed milestones, I raised my concerns with the medical profession.
After months of being dismissed as neurotic, things unravelled quickly when Annabelle got a cold at 10 months and ended up in intensive care with bronchiolitis and RSV, covered in wires and fighting for her life. Suddenly the hospital doctors started listening.
After a barrage of treatment and recovery, a doctor diagnosed developmental delay, and hypotonia (decreased muscle tone), saying she was 'catastrophically' disabled and may never walk or talk.'
'Buy a calendar - you are going to have a lot of appointments,' said the consultant.
A neurologist showed me her brain MRI and explained that Annabelle had an abnormal brain with enlarged ventricles and loss of white matter. I burst out crying and was told I was upsetting other patients.
When I asked the same neurologist if she might eventually have a relationship, she replied: 'If she ever has sex, it will be rape, because she will lack the mental capacity to consent.' I was utterly shell-shocked.
As our life became a whirlwind of hospitalisations and medical appointments, consultants knew no more than their belief she had a genetic condition. Not knowing what either Annabelle's – or the rest of our family's future looked like was agony.
Years of battling for support, paying for private therapies we could ill afford and struggling for any positives followed.
Finally, in 2018, we celebrated the birth of our twins, Alexander and Oliver, and - having signed up to the 100,000 genome project - Annabelle's geneticist told us she had FOXP1, before discharging her.
Through it all, I had no FOXP1 families to meet up with, have a coffee with – with whom to share our woes.
But now, in Amsterdam, we were joining 75 families like ours from 15 countries across the world - including 5 from the UK - at the two day conference.
In all, we met 49 children and adults with FOXP1 – ranging in age from 2 to 46. Meeting scientists and hearing about new research and treatments was awesome. But nothing beats meeting other people like Annabelle and other mums like me.
To my astonishment, I even met another family from London who are only about 10 miles away from us. At last, I was making connections. People I could laugh and cry with. People who understood. And as we talked, I finally started getting answers to questions that haunted me.
What will Annabelle's future look like? Will she continue to progress? Will she ever live independently? Will she ever have a job? Make friends? How do I cope with her challenging behaviour? What will happen when I die?
Until this moment, I hadn't realised that feeling lost, frightened and lonely had become my normal. I felt like I'd known these families for years.
I particularly loved seeing all the teenagers hanging out together, forming friendships. It gave me hope for Annabelle.
Zahra agreed, saying: 'Meeting so many FOXP1 families was mind blowing, overwhelming and emotional at times, but I felt so comfortable talking and sharing our stories. 'We laughed and we cried as we shared stories of life with our Foxes.'
I also met Karl Whitney – co-founder and co-president of the International FOXP1 Foundation, whose 20-year-old son, Jonah, has FOXP1 and whose YouTube video I found when Annabelle was first diagnosed.
I'd connected with some people on FOXP1 Facebook and WhatsApp groups, but it's no substitute for face-to-face contact. It was truly magical for me and worth all the nerves and the special assistance we needed with the flights.
When it was time to leave Amsterdam, I cried. I didn't want to leave the families I'd connected with behind. Annabelle has taught me to reassess what actually matters in life and to see the world in a different way. I feel incredibly lucky to have her.
Now, at last, we have found people just like her. We were no longer alone.
