31 July 2017
“It’s like coming back to family” – patient’s mum takes on charity wing walk in support of staff, patients and families at Bristol Royal Hospital for Children
Jo Atrill wants to show her gratitude and thanks to staff who
have continued to treat and care for her son, Alex Dieterle, at
Bristol Royal Hospital for Children, by braving a wing walk to
raise funds for the hospital's charity, The Grand Appeal.
Alex was first referred to Bristol Royal Hospital for Children
in 2013 when he began to lose weight and wouldn't sleep. "Alex was
born 13 years ago in London, and at the time we didn't know he had
brain damage", explains Jo. "I'd become very ill during my
pregnancy and contracted sepsis. After Alex was born, it became
apparent all was not as it should be. He was diagnosed with severe
brain damage due to the infection being passed to him, causing
strokes. However, apart from four months on the neonatal intensive
care unit, Alex did really well until 2013."
Jo said: "Staff on the Paediatric Intensive Care Unit (PICU) at
Bristol Royal Hospital for Children saved Alex's life when he
stopped breathing and had to be retrieved from Derriford. Since
then we have been in and out of the hospital and returned eight
weeks ago, when Al became very ill, with infections and problems
with his breathing and body spasms.
"Although almost losing Alex four years ago was hugely
traumatic, and I have complex post-traumatic stress disorder as
many parents do after seeing your child suffer such trauma, I am
not afraid of coming back to the hospital. It's like coming back to
family. Everyone knows Alex, says hello and understands my
extremely warped sense of humour and tendency to wind people up.
When we returned this time, I was delighted as always to see the
brilliant James Fraser who has continued to support us on PICU,
having to make some incredibly difficult decisions, and our 'go to'
consultant Daphin Fernandez.
"Now post op, Alex has made steady progress and has moved to our
second home and family in the hospital, Ward 30. Due to the
expertise of the whole team involved in Alex's care and treatment;
including his consultants, surgeon Eleri Cusick, anaesthetic team
and nurses, he didn't have to be extubated or ventilated after
surgery. We hope we will be able to once again take him home, but
Alex still has a long road to recovery here, possibly more surgery
and his battle is far from over. Alex's reward for battling through
all of this will be a kitten called Miss Cusick and two gold fish
called James and Daphin.
"It is also important for me to flag the palliative care team
who check daily to ensure we are all still sane. I am a mum with a
life limited child - I know the pain and the deep gaping hole you
feel as a parent at the thought of losing your child, I've nearly
lost Alex a few times, it never gets easier. We are always
supported by the team and for that I am grateful."
James Fraser, Consultant in paediatric intensive care at Bristol
Royal Hospital for Children, said: "Alex has complex problems
related to his disability that has required input from many
different specialist teams. However he is a real character who has
shown great bravery in the face of severe illness. I have a huge
amount of respect for his mum and dad who always advocate for his
best interests"
On 2 August (weather
permitting), Jo will be taking to the skies for a wing walk to
raise funds for the hospital's charity, The Grand Appeal.
"I'm hoping to raise money for The Grand Appeal so that more
children can be helped by this amazing hospital. There could not be
a better band of humans anywhere than the staff at Bristol Royal
Hospital for Children, who are putting hundreds of other children
back together daily."
Kate Jones, The Grand Appeal's community fundraiser, added:
"Taking to the skies to support the hospital and their truly
incredible care of Alex is so inspiring. We are very grateful to
have an amazing supporter such as Jo join our ranks of fundraisers,
and we wish her all the luck in her wing walk - not that she needs
it!"
In addition to the wing walk, Jo made a dedicated request to
Krispy Kreme UK for a special delivery of doughnuts to staff at
Bristol Royal Hospital for Children, as an extra thank you. Posting
on social media, Krispy Kreme responded to Jo to confirm they would
deliver tasty treats to staff.
"I requested a delivery of doughnuts from Krispy Kreme UK to the
hospital, of which they generously donated over 150 treats to
deserving staff, involved in Alex's care at the hospital", said Jo.
"It sounds silly and so small to give a snack to people, who do so
much, but it's a tiny thank you, and sometimes, when times are hard
we all forget to do that don't we?"
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