On the 22nd-23rd of June 2024 I'm going to attempt the Isle Of Man Parish Walk, an 84 mile long course over 24 hours where participants are timed speed walking through every parish on the island.

My minimum goal is to reach Rushen parish which is 19 miles but ideally I want to make it to Peel which is 30.5 miles, any more than that is a bonus! I'm participant #245

Why I'm doing this: put simply for my son, Harvey.

Sorry it's a bit of a read, but I felt to really know why I'm so passionate to do this, you needed to know the whole story. Please be warned I mention near death experiences of a child and there are some photos of my son post surgery when he was very poorly.

During my pregnancy with Harvey we were given an antenatal diagnosis of Trisomy 21 (Down Syndrome) with a complete AVSD, he was missing valves in his heart to stop back flow of blood we were told before the age of one he would need open heart surgery to repair this. Not only that but we also discovered he had Dandy-Walker malformation: meaning he was missing a crucial part of his brain that effects co-ordination. This combination of conditions is INCREDIBLY rare, Harvey is the 4th known person ever reported in the world to have both because of this there was no way in knowing how he would be physically. We didn't know if he would even survive the stress of labour. We were terrified of the unknown for our son but that's where our first hero came into our lives.

PADS- Positive About Down Syndrome:

An online charity that supports people through all stages of T21 diagnosis and beyond. They send care packages to new parents, Information packs for anyone wanting to know more about Down Syndrome, online classes to help with development for children with T21 such as makaton/signing, potty training and so much more. They connect you with families in similar situations and lend a sympathetic ear to anyone who needs it. Their whole goal is to help families and change the negative stigma around Down Syndrome. They couldn't obviously tell us anything about the Dandy-Walker condition but they definitely helped us understand what life would be like with a baby with Down Syndrome and how amazing it would be.

Harvey smashed everyone's expectations of him. He arrived as healthy as could be given the situation his heart was stable, he fed like a dream, everything was "normal" he didn't even end up going to NICU. We were home 5 days after his birth because he got a little jaundice but apart from that he was perfect!

Until Christmas Day 2022. This was one of the worst days of our lives, Harvey nearly 5 months old went into cardiac arrest and was unresponsive, I performed CPR and we were rushed into hospital, where we found out that he was in heart failure. We were then air ambulanced to Alder Hey, so he could be prepared for major surgery. We would spend the next 4 months in Liverpool while he recovered and overcame obstacles no baby let alone person should face, including several respiratory and cardiac arrests, the worst one being when he was in ICU he flat-lined for two full minutes all of which I witnessed.

My husband, Josh, stayed back on the Isle of Man to care for our daughter so I was alone in Liverpool. He would come over as often as he was able to with work but the costs quickly built up, between travel expenses, food and basic necessities for me we would have struggled if it weren't for the next of Harvey's Heroes.

MAWCH- Manx Association for the Welfare of Children in Hospital:

They generously provided us with a cheque to help cover these expenses but they help families with all sorts of different things they might need when their children are in and out of hospital including welfare packages with essentials in for the children's ward at Nobles Hospital.

This was the toughest time of my life, mentally I was at an all time low seeing my baby boy fight every day for his life, separated from my family even if we video called everyday it wasn't the same. The 3rd hero came in leaps and bounds for me at this point.

Arlo's Adventure:

A simply brilliant charity that took the time to check in on me almost weekly, sent a really thoughtful care package to me and offered to help with with anything I may have needed. They do so much for families with children in hospital they can provide travel expenses, post essential items including posting any baby equipment you need from home like car seats/prams. They can also support bereaved parents and focus on supporting siblings through unthinkable times.

Ronald McDonald House:

The entire time Harvey was in ICU I wasn't allowed to sleep at the hospital with him, but I didn't live locally so couldn't go home overnight because of this I was given a room at Ronald McDonald House, a charity that provides a home away from home for families with children in hospital. I would have been bankrupt paying for accommodation and travel to and from the hospital that entire time, and it was so close to the Alder Hey I never felt far from my boy when I would reluctantly leave him in the ICU nurse's very capable hands for the night. Not that I slept very much from stress despite the very comfortable bed.

Harvey, I'm glad to say has completely recovered from his heart surgery now! and one year later you would never know looking at him what an ordeal we went through. He is absolutely thriving! We are so proud of the cheeky little boy he's becoming. Harvey still has his conditions (Down Syndrome, Dandy-Walker Malformation) he will have them all his life and while he has a great quality of life, he will most likely always need some support in one aspect or another. Which is where Harvey's 5th hero comes in.

Rebecca House:

Mostly known as a children's hospice, they also support families with children who have life threatening or limiting conditions. They are a safe haven and a home from home environment in which physical, emotional, recreational and spiritual care is offered and where children are able to relax and have fun. I adore the team there so much and can relax fully knowing my son is in amazing hands.

This year we are in much better place, I've wanted to do this for a while but I know now is the right time. I want to raise as much as I can to try repay these 5 amazing charities I've named Harvey's Heroes for everything they've done for us so they can continue the great work they do.

Anything you can give will be so appreciated, the money I raise will be split evenly between the five charities. Please give this page a share to your friends, family and coworkers and I've posted links if you'd like to read more about the charities and their work.

https://positiveaboutdownsyndrome.co.uk/

MAWCH - https://www.facebook.com/groups/525851167467313/

https://arlosadventure.myshopify.com/

https://rmhc.org.uk/

https://www.hospice.org.im/our-care/rebecca-house/how-we-can-help/

Thank you, From Harvey.