Beneficiaries of After Umbrage are a resilient little crowd. Behind their stoic fronts lie amazing stories. This is the tale of the Raja Family of a small village on the Isle of Anglesey, North Wales.
Daniel Raja was born with only half a functioning heart and other complications. The condition is called Hypoplastic Left Heart Syndrome. Maggie, his mother and her late husband, Peterus, were living and working in Borneo at the time. They flew back to the UK with a medical escort when he was only three months old. They were bound for Alder Hey Hospital, Liverpool and life-saving surgery on bypass. Daniel survived the long haul journey and a challenging time in the ICU. But their lives were irrevocably changed.
Second bypass surgery under the age of five
Maggie and Peterus were told when he was born, that he had a 50% chance of reaching the age of 10. He has overcome great odds and is now 16.
At almost 5 years old, he went through a second planned surgery on bypass to make the most effective use of his half heart.
“Life with Daniel is very unpredictable.”
“He begins each day with about half the energy of an able-bodied teenager. We need to manage that carefully. Because, when it runs out, he can’t carry on. Planning an outing means researching where we can park, how far he may need to walk, where he can stop and rest. He also suffers from debilitating migraines. I am always on standby to dash to school if he is ill, and all plans must be cancelled every time he’s ill. For example, last Friday he was looking forward to youth club, but instead we queued for antibiotics because a slight wound in his toe (where oxygen saturations are lowest) became rapidly infected”, says Maggie.
Emotional and financial hardship
Maggie says, “I gave up my career to be his carer. Imagine, when we lost my husband to cancer in 2016, it hit us hard both emotionally and financially. It has been hard to cope as a single parent carer, and I could not afford a holiday.”
“It is hard to look after my own health because I am ‘on duty’ 24/7, and will always prioritise Daniel’s medical care. When things go right and we have wonderful experiences (which we do!), I am incredibly grateful because absolutely nothing can be taken for granted. I live ‘in the moment’ far more than I did before he was born”, says Maggie.
How did Maggie become a beneficiary of After Umbrage?
Maggie heard about After Umbrage from a Facebook post by the charity Together for Short Lives. It popped up in her news feed when she was particularly down with the challenges she faces.
“I used to sketch in Bath long ago as an art student in Bristol. Sadly, I had not been able to revisit favourite spots for over 30 years. So the location of Kingham Cottage sparked the hope that I could fulfil a personal dream to return”, said Maggie.
Rather helpfully, Bath is about half-way between where her younger brother and sister live in Basingstoke and South Wales. The idea grew that it might be a wonderful opportunity to get some of the extended family together with Maggie and Daniel travelling down from North Wales.
An opportunity to gather extended family
Daniel stayed with all the family at Kingham Cottage in late July 2019. Maggie’s brother and his wife arranged to stay a night at the pub walking distance up the road enabling a family dinner there.
Together, they did two main sorts of things. The first was for Maggie to revisit memory lane in Bath – The Royal Crescent including the Museum at No 1 and surrounding architecture, the cathedral, Pulteney Weir, The Assembly Rooms, the Pump room…they even had a go at glassblowing at Bath Aqua so they have lovely baubles as souvenirs of their trip.
The second, as National Trust members, included other delightful places open at modest cost in the area. My sister had never been to Stonehenge, for example. Together, we loved the stunning view at Prior Park Landscape Garden. Also, the staff were incredibly helpful given the limitations of my son’s mobility.
Maggie’s greatest joy
Maggie says her greatest joy is that Daniel has grown to be a polite and creative young man, who faces life bravely and cheerfully.
“I was tearful last week at the compliments paid to him by his teachers in his school annual review. He did well in his GCSEs by working consistently whenever he was sufficiently well and is now tackling 6th Form, despite the fact his doctors are considering further surgery. I cannot predict how 2020 will unfold for us, yet Daniel touches the lives of others positively every day.”
We have been severely misunderstood at times
“I think my most painful struggle as a carer has been because Daniel’s severe diagnosis is invisible when fully clothed. We have been seriously misunderstood at times. For a few years, I cared for my elderly mother also. Both she and Daniel were Blue Badge holders. I will never forget Daniel turning blue with lack of oxygen as my mother struggled to walk with two sticks in our local supermarket. I prevented him falling over by picking him up, only to be accosted by a stranger who said, ‘Why don’t you put that lazy boy down and help your poor mother!’ Yet, of my two ‘patients’, he was the one at risk of needing an emergency ambulance.”
“I am glad that invisible disabilities have been somewhat more in the spotlight recently. We have bought special stickers for the car to help reduce the risk of abuse when needing to access Blue Badge spaces and so on.”
After Umbrage thanks Maggie and Daniel for sharing their story with our friends, followers and supporters.