Seven-year-old Sofia Corey who has been cocooning for over a year got to taste her first ever Easter Egg this weekend in the back garden of her home in Walkinstown.
Sofia has been a kidney patient from the time she was a new-born and due to the diet restrictions of her illness she was denied chocolate.
That all changed and her penchant for chocolate developed quickly after she received a life changing transplant on Christmas week last year.
Her parents Elaine McElroy and Daniel Corey are sharing their only child Sofia’s health story in support of Organ Donor Awareness Week 2021 which is organised by the Irish Kidney Association and concluded over the weekend.
Sofia was born a month prematurely and was diagnosed with the kidney condition called Congenital Nephrotic Syndrome when she was just seven weeks old.
She became a patient at Our Lady’s Hospital for Sick Children in Crumlin and underwent an operation to have one of her kidneys removed when she was six months old.
When she was two and half years old her parents were trained up to give her nightly dialysis treatment which she underwent at home for twelve hours at a time.
This continued for over four years until she was called for her kidney transplant last Christmas.
Sofia’s mum Elaine McElroy explained:
“Because of Covid 19 and as a dialysis patient and now a transplant patient in the high-risk category, she has been cocooning for over a year away from her school friends.
“It’s great that Spring has arrived as she can now enjoy more time outside in the back garden where she loves to play in her playhouse.
“We are so grateful to the kidney donor for finally giving Sofia a chance of a normal childhood.
“Both myself and Sofia’s father were extremely disappointed to learn that neither of us were suitable kidney donors as we had always assumed that one of would be.
“Sofia had to reach 12kg in weight and 90cm in length in order to be accepted onto the transplant wating list.
“She needed to be big enough to be able to receive a donor kidney.
“She was five years old before she reached the required size.
“Then Daniel and I began the screening process for living donation which turned out to be unsuccessful.
“We can never thank the donor family enough who transformed Sofia’s life.
“We hope that by this September Sofia can be reunited with her school friends when she starts first class, who she hasn’t seen for over a year because she has been cocooning with just me and her dad.
“She can now look forward to a normal childhood and like most kids she has developed a fondness for chocolate.
“This will be her first Easter to enjoy Easter eggs, just like her friends.
“She is totally free from dialysis now and we are starting to see her appetite improve and she is much more active now. She no longer has diet and fluid restrictions.
“The fluid restrictions were very tough for her particularly in the summer months when she was confined to just 200mls of water which we would have to make up in ice cubes to try to prolong her enjoyment when she was thirsty.
“She liked to suck on a damp sponge. Her life revolved around nightly dialysis before and lots of sickness and hospital visits but since her transplant she hasn’t had any setbacks.
“She was so excited to have a go into hospital on Good Friday to finally have the dialysis line removed from her chest.
“She can’t wait to go swimming as she has never done this before. We are going to buy her a paddling pool for the sunny weather, something she has never been able to enjoy before when she had a dialysis line.
“I would urge everyone to try to understand the importance of organ donation. A donor has given Sofia a chance to have a normal childhood. Our family will never be able to describe how grateful we are for this.”
Organ Donor Awareness Week 2021, is organised by the Irish Kidney Association, and took place from 27th March – 3rd April.
Whilst many things have been put on pause during the Covid-19 pandemic, the need for organ donation and transplantation continues.
Despite the unprecedented challenges which the pandemic has presented, organ transplants have continued thanks to organ donors and their families and also the dedicated transplant teams in our transplanting hospitals, Beaumont, St. Vincent’s, The Mater and Temple Street.
At any one time in Ireland there are between 550 and 600 people on waiting lists for organ transplants including heart, lung, liver, kidney and pancreas.
There was a fall in the number of transplants in 2020 across all the national transplant programmes.
Whilst the 190 transplants carried out were 84 less than in 2019, the thoughtfulness of the 62 deceased donors (last year) in these very challenging times is inspiring.
Speaking at the national launch of Organ Donor Awareness Week last week, Mr. Colin Mackenzie, National Honorary Chairman, Irish Kidney Association said:
“Sadly Covid-19 had and continues to have a serious unwelcome impact on the transplant community.
“Initial medical advice was to cocoon.
“Suddenly people previously leading a normal life, can no longer attend work or socialise.
“There was fear and anxiety about the risks amongst patients attending hospitals. This has also had a significant impact on people’s mental health.
“A number of people in the dialysis and transplant community died with Covid-19, and we would like to express our deep sympathies to their families.”
Ms. Carol Moore, Chief Executive, Irish Kidney Association commented, “A year ago, the 2020 Organ Donor Awareness Week campaign was postponed and ultimately cancelled at short notice when Covid-19 reached our shores. This impacted on the Irish Kidney Association’s ability ‘on the ground’ to promote organ donor awareness and the annual Awareness Week campaign. With Covid-19 still a reality, we have adapted with new ideas for the 2021 awareness campaign.”
Ms. Moore explained, “The Irish Kidney Association is delighted to announce that, for the very first time, demonstrating nationwide solidarity in support of organ donation, County and City Councils around the country will light up 70 public sites in green throughout the week-long campaign. Green is the internationally recognised colour which celebrates organ and tissue donation.”
“Patients on transplant waiting lists live in hope that organs will become available to them. Whilst there is hope, it is also a difficult time as their future is uncertain and they know that another family is grieving the loss of a loved one. By lighting up public sites in green we are drawing attention to organ donation being an integral part of active citizenship on the part of the public. From dusk to dawn, 70 public sites will be lit up in green, undoubtedly prompting much discussion around organ donation.” Sites listed on www.ika.ie/donor week2021
This year’s Organ Donor awareness campaign was built around the theme #Life is a Gift Pass it On and Share your Wishes. The key message is that the public can play their part in supporting organ donation for transplantation by ensuring that their families know their wishes. i.e., have the conversation #have the chat
The words #Life is a Gift, Pass it On represent the transient beauty of the ‘gift of life’ underpinned by the selfless generosity of the human spirit. Share Your Wishes represents the importance of discussion with loved ones about organ donation and sharing your wishes is the cornerstone of the campaign.
Social media hashtags for Organ Donor Awareness Week are: #LifeIsAGift and #DonorWeek21. People can also tag the Irish Kidney Association when doing their own posts (@IrishKidneyAs on Twitter, @IrishKidneyA on Instagram and @IrishKidneyAssociation on Facebook).
Individuals who wish to support organ donation are encouraged to keep the reminders of their decision available by carrying the organ donor card, permitting Code 115 to be included on their driver’s licence and having the ‘digital organ donor card’ APP on their smartphone.
Organ Donor Cards can be obtained by phoning the Irish Kidney Association on 01 6205306 or Free text the word DONOR to 50050.