Broken hearted Shrewsbury parents raise cash in tribute to baby son Rollo
A couple from Shrewsbury who lost their baby son have vowed to raise funds for the UK's first children's rare disease centre in his memory.
Little Rollo sadly died just 18 days after he was born last year with a rare condition called posterior urethral valves which caused his kidneys not to form properly.
His parents Lucy Wright and Richard Tisdale today spoke of the "indescribable" pain the couple felt by the loss of their son – and pledged to raise funds to help other poorly children.
Miss Wright, 33, says she had a text book pregnancy, but during the birth Rollo had breathing difficulties and was taken away to neonatal intensive care unit.
She said: "After days of tests we discovered the extent of his condition and he was transferred to Birmingham Children's Hospital.
"Unfortunately after two weeks of extraordinary support and care from the renal ward he died.
"Our hearts are broken and our pain is indescribable, but we are so grateful and proud that he was able to spend some precious time with us."
Posterior urethral valves (PUV) is a condition found only in boys that affects the urethra.
PUV is not inherited in any recognised way and seems to happen in the early stages of pregnancy.
It is not due to anything a mother did or ate during pregnancy.
In PUV, the urethra has a blockage in it near the bladder. This makes it difficult for a child to pass urine. As the bladder pushes hard to get the urine out, it causes pressure which may result in urine being pushed back from the bladder into the ureters and kidneys.
About one in every 8,000 male births has PUV.
Birmingham Childrens Hospital Charitys Star Appeal will fund the UKs first holistic centre for children with rare diseases and undiagnosed medical conditions. It will cost £3.65m.[/breakout]
Miss Wright, a teacher in Shrewsbury, and Mr Tisdale are now heavily involved in fundraising for Birmingham Children's Hospital charity's Star Appeal to help raise £3.65 million to create the first children's rare diseases centre in the UK.
The aim is to provide co-ordinated care, treatment and support to help to brighten the lives of poorly youngsters.
It's being headed by Rollo's consultant Dr Larissa Kerecuk.
The couple recently attended a rare disease day the hospital where they met author Roald Dahl's widow, who is also involved with the setting-up of the centre.
Miss Wright added: "We intend to do as many things as we can in the weeks, months and years to remember Rollo.
"We plan to raise money and to support the work of a place, an organisation, now a huge part of our memories and our hearts.
"We are incredibly appreciative of the love, support and dedication of nurses and our consultants.
"They made our time with Rollo even more special and we take great comfort from the time we had with him. The ward could not have done more for Rollo, our family and all the other brave parents and children who stay there."
Miss Wright and Mr Tisdale have partnered with Woodings & Co and artist Matt Sewell to create star necklaces for the appeal.
She said: "We bought our engagement rings from Carla and Stu at Woodings and loved their professionalism and friendliness from the start."
She continued: "When Rollo died Carla contacted me out of the blue with a necklace she had made for me. A friend also had a star necklace made for me to remember Rollo, and I wore them both constantly.
"Carla offered to start making the necklaces so we could raise money for the hospital."
After six months of working on the project, designing the star casts and the cards, the product is finished. The stars are solid silver, and handmade. Matt Sewell designed the sky lark bird logo and the cards have been letter-pressed.
Miss Wright said: "We could not be more proud.
"So far the necklaces have raised over £2,000 and that figure continues to rise. We have big plans, and hopefully we will be extending the project with the hospital soon.
"We love him more than words can ever be enough for, he was perfect.
"Thank you to all our wonderful friends and family for their ongoing support and love – without you this would have been so much less bearable. I cannot find enough words to thank you."
She added: "The NHS needs never ever to be undervalued and the amazing staff that we encountered will never be forgotten.
"And for this reason it seems most fitting to raise money for the Renal Unit at Birmingham Children's hospital."
She added: "We plan to raise money and to support the work of a place, an organisation, now a huge part of our memories and our hearts.
"We are incredibly appreciative of the love, support and dedication of nurses and our consultants.
"They made our time with Rollo even more special, we take great comfort from the time we had with him.
"The ward could not have done more for Rollo, our family and all the other brave parents and children who stay there."
Find out more about the star appeal at https://www.bch.org.uk/?q=starappeal visit Miss Wright and Mr Tisdales fundraising page at www.justgiving.com/rolloidris or text STAR to 70800 to donate £5 to the Star Appeal.
