FOUNDERS of the KDARS for Kids( Kidney Disease and Renal Support) group, Heather and Steve Davis of Brereton Avenue in Cleethorpes are organising an open service of thanksgiving in Grimsby.
Also celebrating the groups third birthday, the service will be held on Sunday, April 23, 10.30am at the St John St Stephen and Shalom at Rutland Street with Cannon John Ellis MBE.
Cannon John Ellis
We caught up with Heather and Steve at their home, ironically on World Kidney Day, whose daughter, Lilli Cotterill (10) suffers with kidney disease, just as Heather was putting a power point presentation together in readiness for the service which will also include her daughters journey.
“Writing this is harder than I thought it would be, I’m fighting back the tears, the memory is still so raw, even 10 years on!” said Heather.
The couple and many of their KDARS members and supporters are also marking the third birthday of the group’s beginnings giving help and support to the many families around the world, with children living with chronic kidney disease.
It’s wonderful John Ellis will be officiating the service,” smiled heather.
“He is a close family friend and has been with us since the beginning our journey with Lilli.
“In fact it was John who christened Lilli when she was just five-days old as we feared our time with her was short.
When Lilli Rose was christened and how she is today
“From Lilli’s birth we never knew from one day to the next what the future would hold, so we are about making memories and making the most of life and being thankful for what we have,” smiled Heather through her tears.
Both Heather and Steve along with many, many other parents know the agony, trials and on going battles they must enduring, having a child with a chronic illness.
Heather explained: Many children from this area have to travel to bigger cities and specialist units for check ups and treatments, and kidney kids are no exception.
“Often with other siblings in the family, sharing time and love with other children at critical times is hard and parents sometimes have to spread themselves thinly to do what they can,” she added.
During the service, a video of kidney kid Sammi Scott of Warminster will be shown.
“We are having the lighting of candles, and a power point presentation too, added Heather.
“I’m hoping that everyone, including families and friends will be able to offer a few words of their own to put on the slide show, they can say the word themselves or myself, Steve or John Ellis can say them.
Heather reflected: “Life is a funny thing, it has this habit of throwing problems in our path, some we can walk around with relative ease, but others are massive up hill battles and in situations like a sick child, where does one go for a helping hand?
“At the time when Lilli was born we had no support, no one to turn to, we quite literally had to wing it.
“Our journey began on the same day Lilli Rose was born, that day would change our lives forever.
“We have slept on hospital chairs, skipped meals, cried tears of sadness and joy but we have become experts on our child’s condition and we are strong advocates and have had to make life changing decisions.
“We are parents of a medically complex warrior and I wouldn’t change it for the world.
Kdars was created by myself and my husband, this was a direct result of Lilli’s birth and our personal journey with the life long illness which has bestowed our little girl,” she added.
For Heather, after 60 hours of being in labour with Lilli, a Caesarean section was performed and she was diagnosed with chronic kidney disease caused through acute kidney injury which was secondary to antepartum haemorrhage during the newborn period.
Lilli died twice was successfully resuscitated both times and put on a ventilator.
“After my surgery I was informed my baby girl was very poorly but I didn’t comprehend what I was being told.
“Never had I felt so alone or so scared.
By day three Lilli had shown no improvement, and was told I should think about getting her baptised as she was unlikely to survive.
“It was my sister who contacted John Ellis, and on day four Lilli was baptised, with only my mum and my sister present,” said Heather.
There followed weeks and months of being transferred to Nottingham Hospital, tests and treatmebts and visiting the hospital chapel praying to God to let her little girl live.
“ I think God wanted me to keep Lilli for a while longer, as on day seven I finally held her in my arms for the very first time. I will never forget that moment for as long as I live I will be forever thankful,” she smiled.
But 10 years on Lilli is now a happy ‘nutty’ 10-year-old.
“So out of this dark and negative journey we have created something positive and we have given light to other families riding this roller coaster ride,” said Heather.
Kdars offers support, advice and friendship to so many other families, not just here in the UK but across the globe, we have reached out to families in Australia, various parts of the USA, South Africa, Asia, and across Europe. Also giving financial support of money for food whilst poorly children have been in hospital, parking fees and fines, paying for basic items such as prams, bedding, travel expenses even food.
“Last Christmas we did a Santa run for many of our families, sending toys and gifts off to around 100 children, including siblings who so often get left out,” said Heather.
“It’s not easy watching a sick child but our children don’t want sympathy they want your understanding, for a chronic illness there is little let up.
“If you are a teacher with a child in your class that is living with a chronic illness a little understanding goes a long way. “They tire easily, they can’t run around in PE like other children, they have on going appointments with various health professionals, don’t hold this against them and punish them for not being in school, its not their fault.
“Dialysis is tiring and time consuming please give our kids a break.
“They might not have had much sleep and this isn’t because they don’t want to sleep it’s more to do with the fact that they can’t sleep.
“Let our children teach you about their illness, you never know you might discover things you never knew about.
“So the service will also celebrate three years of kdars for kids and I wouldn’t want to spend day this anywhere else than here with my other family at the church giving thanks.
“I would like to thank John Ellis and councillor Hazel Chase and her husband Norman, for their help and support with kdars and the Pitstop information centre and cafe in Sidney Park.
“Also to Linda Pickering of the British Kidney Patients Association, she have been in our thoughts and prayers, without her on going support and that of the British Kidney Patients Association and to the kdar admin team,” said Heather.
And looking to the future, Heather added: “ We have had to put on hold the awards night we had been organising, but the PitStop Cafe will be open in Sidney Park at the end of March”
Everyone is welcome to attend the open service.