Thanks for taking the time to visit my JustGiving page.

Our little miracle Harry Tomas Russell was born on 26th July 2012. From the moment he was born it was obvious Harry had every intention of keeping us on our toes. Only 2 hours after he was born he checked into the neonatal unit. Little did we know that would be the first of many hospital stays, visits and appointments that would shape his life. The first we knew of Harry’s disabilities was when he failed his new born hearing test and as time went on we became more aware and knew that our little boy was unique. The main problems Harry had to cope with were: hearing & vision loss, epilepsy, constant and recurring respiratory problems, chronic reflux, and feeding issues that lead to a Gastrostomy. These physical and mental disabilities resulted in severe global development delay.

Harry was diagnosed with a Mitochondrial disorder a cruel life limiting genetic disorder. At that point our lives changed forever and became dedicated to endless appointments and therapy sessions to allow our son to live life to the full.

Probably the most significant moment in Harry’s short life was when Keech came on board. It was a huge turning point for our family. Hospice care is not just about death, it is very much about living and Keech made Harry’s final year very much about life! There was a weekly Tots and Toys group, Music therapy, Reiki, hours spent in the sensory room and fun times in the hydrotherapy pool. Harry was given respite stays so we could recharge our batteries while he was having an absolute ball with the amazing nurses who gave Harry outstanding care and love.    Keech showed us how to make every moment count and make memories to last a lifetime.

Towards the end of Harry’s Life Keech offered to take the lead in his care, and guided us safely both medically and emotionally. At times we were feeling out of control and lost, due to his complex needs it was very difficult to get the answers we needed and making plans was hard. The hardest part for any parent of a child with a life limiting condition is to know when to stop fighting on their behalf and let the child lead the way. This goes against everything we are conditioned to do as parents. We know we did everything we possibly could for Harry, and Keech saw that Harry’s final days were pain free and peaceful.

Keech made that final week something we will treasure forever...we got to see Father Christmas at Center Parks, and we got to celebrate Christmas early with our family. Keech put on a 3-course Christmas dinner complete with Christmas tree and presents. We even had a family sing-along in the music room after, and like any normal Christmas Day most of us were caught dosing in the afternoon. We even got to take Harry in the hydrotherapy pool and take him home for one last time.

Sadly Harry passed away at 7.05pm on 17th November 2015 aged 3 years. Our complete world shattered and a huge hole left in our lives that will never be filled. Our Super Harry had the most beautiful soul and a smile that could completely melt anyone’s heart. He gave the most amazing cuddles and he would look at you with those perfect blue eyes and our shared love felt so intense it hurt. Even after Harry’s passing Keech continue to be a part of our lives and show us love and support, we’ve received bereavement counselling, Reiki, a sibling support group Sparklers for Ella to attend, remembrance events and services and the list goes on.

So I am stepping completely out of my comfort zone to push myself physically and mentally to give back and acknowledge all Keech did for us as a family. Keech rely on 70% of their income from donations and every penny raised makes the world of difference to seriously ill children and their families at a time in their lives when they need it most.  Did you know that just £38 pays for one hour of nursing care.  £20 pays for a family swim in the Hydrotherapy pool and just £59 pays for bereavement care to help a family come to terms with their loss.

But this is also about my personal journey, a mother loosing her child is just not meant to be and I battle with that daily. Sadly I also lost our daughter Freya Lily at 40 weeks pregnant in 2006 through stillbirth, loosing 2 children changes you as a person but despite grief taking me to some dark places it is possible to find hope and joy again. Doing this Trek with Harry, Freya, Ella and Mark by my side gives me focus and purpose.  Harry taught us so much in his short life something I take with me every day. We made a promise that Harry will never be forgotten and his memory will live on in all we do. Well this is just a little step on that journey. 

Thank you for listening any donations however small mean so much and go a long way. 

I look forward to sharing my journey of fundraising events, training and blisters over the next 18 months.

Much Love
Julie

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