Polar Night Marathon Tromso-Fund Raiser For Rainbows Hospice

Hi Everyone , My name is Zulekha Daud , mum to Zidan Daud. Many of you may now know a glimpse of my precious story and a tad part of my 9.5 years experience of living within 4 hospital walls. For those of you who don’t know , Zidan had a neurological condition called Krabbes , a Leukodystrophy which meant Zidan was very vulnerable, sensitive and very prone to infections . His condition led to experiencing many unexpected health scares, encountering medical challenges, MDT meetings, and pro longed hospital stays . This meant as a mum I took extreme and extra precaution in absolutely everything about Zidan. This included his exposure , hygiene, pad changes , clothes , hair, skin care , position changes , respiratory equipment , OT, physio , Gastro feeding equipment, suction unit , oxygen, non invasive ventilator, inhalers , his central line , and all his day to day medications . This road of mine was very beautiful as Zidan changed everything for me! I learnt the true definition of life, love strength, and resilience. Zidan was so strong ! Throughout stressful hospital treatments , I would relentlessly cry , yet Zidan would be laying with strength and peace. Everyone who met Zidan was in awe of his strength, beauty and his road to recovery, he always bounced back. I thank all hospital staff, Diana nurses , rainbows staff members and a handful of my close family & friends who always contributed in helping Zidan get better , and for praying to the Lord for Zidan’s speedy recovery. A heartfelt gratitude to those who always picked me up , and wiped my tears over and over again , and for those who continue to do so , it indeed does not go unnoticed , and I am deeply thankful for that .

My biggest gift and miracle in life was the day Zidan was born , unfortunately this gift of mine was returned to the Lord after 9.5 years. During these years I met the most amazing and genuine people who supported me, and I cannot thank them enough - the hospital, its staff members , from the Drs, Nurses, HCA’s ,the Domestics , and the play specialist . I also want to say a big thank you to Rainbows hospice for what they have done for Zidan, myself , my husband and my daughter. To show a token of my gratitude I want to give back to those who gave to me in my darkest of days . I recently participated in the Leicester Marathon in October 2024, which I successfully completed , and raised a generous amount of funds for a ward that holds a great space in my heart, The Leicester Royal Infirmary. I now want to give back to Rainbows Hospice , which is next on my list , another place so dear and close to heart! I can never forget what they have done for me and my family . Little did I know that in May 2023, would be Zidan’s last ever hospital admission , and as soon as he came home and got discharged, Rainbows Hospice kindly offered for me , Zidan, my daughter and husband to come have a staycation in July , as we had gone through a very hard and rough time in hospital . One of the hardest and longest !

Rainbows believed that Zidan would benefit and have the best experience , and have an opportunity to create good memories . At first I didn’t think it was a good idea , after being ventilated and having ongoing cardiac issues , the thought of getting home from the hospital was a very big deal, I couldn’t even think about taking Zidan out the house for socializing , I never ever did ! Even a walk down the street was very farfetched whenever we were home . He was far too vulnerable, a 5 minute walk could potentially lead to a 5 week hospital admission . Zidan was very particular and only enjoyed his own private space at home. He didn’t like loud noises and having too many people around him . I was extremely hesitant , and didn’t think this was a good idea , as being in hospital just shy of a nearly a year with re occurring infections , and a change in home ventilation was already so over whelming.

As Zidan came home and settled in , I told Rainbows I’m not sure if coming for the staycation is a good idea , as I was very sacred , I didn't want Zidan getting unwell, as he was doing so well! it wasn’t worth the risk. As always I would ring my close knit circle, vent out and tell them if taking Zidan for a nice relaxing staycation was even a good idea. I told Rainbows , I will see how we get on and if he continues staying well , I will think about it , as they gave me the option to even cancel one hour before arriving ! I seen another miracle , Zidan was now home for two months , which often never happened, and the Rainbows stay was round the corner ! I convinced myself that we will go , and I was praying so hard that ‘ Please God don’t make him fall sick if we go ‘ I only want to make good memories …and exactly that ! Me , Zul.. took Zidan out the house for a staycation !!! Everyone was shocked that I let Zidan out his glass box ! We went and it was just all meant to be ! His two besties from the hospital were actually there as well , and we had the best time as a family of 4! Mummy , Daddy , Zid & Safaa! We were together as a family ! It wasn’t Safaa & Shez at home and Zid & Zul at the hospital ! We went somewhere together ! We swam , took Zidan in the pool, even that with his oxygen tank and mask ! We went out in the playground and clamped his wheel chair to a wheelchair friendly swing . Zidan was having the best time ! Zidan and Safaa both were doing normal things like playing arts and crafts , making bracelets , building superhero Legos . It was just so perfect , it was a dream ! We even slept in the family room! The impossible , became possible ! It was also a coincidence that Safaa’s Birthday fell within that same week! We celebrated Safaa’s birthday together with our Rainbows family and Zidan at Rainbows! ! It was the best holiday ever !!! Little did I know , these were the last few weeks of Zidan’s life - and we was spending that time doing beautiful things TOGETHER! little did I know that these would become so precious and delicate , memories that I will forever cherish ! I have to thank Rainbows Hospice that as well as the 10000 pictures of me and Zidan cuddling on the Ward 11 beds, HDU beds , and ICU chairs , I also captured beautiful memories of us doing some normal things which we never did in 9 years ! Thank you Rainbows for allowing me to capture memories of a lifetime ! I also have to thank my hospital mums, my sisters , my husband , and my daughter who gave me the push to go Rainbows that week ! The best week of my life ! ! Until we meet again in heaven , Zid & Zul Forever .

I now have signed up to run my second marathon , within the space of just two and a half months , I will have done two Marathons! My second marathon is for Rainbows Hospice . I will be running abroad on the 4th of January 2025 in Norway, The Polar Night Marathon 2025 in Tromso. I will be running in the snow , under the Northern Lights! I would kindly like to ask you all to help me give back to Rainbows Hospice . A kind donation from you can have a big impact on families like mine , who can have experiences like us !

I want to thank everyone who has previously donated , and want to thank those who will kindly donate making a positive impact , and also help in continuing keeping Zidan’s legacy and strong and alive. With your donations we can make a difference to special lives , and provide opportunities for those who can’t just pack a bag and go off on a staycation !

A big thank you to Rainbows - A beautiful place which reminded us what smiling and having a good time felt like ! A place which can accommodate for special needs children . For children who survive off ventilators , Bypaps, and many other medical devices , a place that offers respite as well as medical help with highly specially qualified medical professionals . A place which helps mums like me to have some fun with their loved ones , as well as helping taking care of their loved ones ! Rainbows a place that brightens lives !

A Thank you to all of you who have read, shared and donated . It means a lot .

Zul.