“The Fisher Boys 69.2 mile walk to remember”

Knowing what to write has been difficult. Grief is weighing very heavy on our hearts and no matter how many times I start to type; I don’t feel I can get across what I mean to say. In the midst of our grief, this is what I have.

How do we honour our children and improve the outcomes for other children living with congenital heart disease? It’s a question we’ve asked ourselves over and over again. It’s something we feel really passionate about. We just wish we knew more.

In loving memory of our beautiful baby boys, Koa & Lando, who have both passed away due to being born with congenital heart disease. Koa, passing away in January 2025 at only 13 weeks old and Lando, passing away in September 2021 at only 10 weeks old.

We’re going to walk from our home in Lincolnshire to Leicester Royal Infirmary Hospital, via Rainbows Hospice in Loughborough, starting on Saturday 24th May (bank holiday weekend). This walk will be approximately 69.2 miles and we aim to walk it from start to finish with no overnight break.

Our route will see us start in Saxilby, Lincoln before taking us through the following villages/towns/city;

Broadholme, Harby, South Clifton, Holme, Winthorpe, Newark, Kelham, Averham, Fiskerton, Gunthorpe, Burton Joyce, West Bridgford, Wilford, Ruddington, Bunny, Costock, Rempstone, Hoton, Cotes, Loughborough (RAINBOWS Hospice), Quorn, Mount Sorrel, Rothley, Birstall, Leicester Royal Infirmary. Passing through Lincolnshire, Nottinghamshire & Leicestershire.

You can follow along for our planning and preparation, as well as route updates via my Instagram page – jess.with.three.poorly.hearts – (please note, this page isn't for the faint hearted, it's a page dedicated to raising awareness by sharing some of my boys heart journeys). We would love for as many of you to join us as possible, from friends and family to fellow heart warriors and their families. We’re going to raise awareness with the hope to raise as much money as we can for vital research.

We so desperately want something good to come from losing two of our children, it’s so hard to know what that looks like, although we have an idea. Don’t they say all it takes is an idea? So here goes, let’s hope it works.

If we had our way and to name a few, we’d ensure parents/carers are provided with more support, we’d ensure all professionals are provided with ongoing training on communication & communicating with compassion, have a specialist trained life-limiting/bereavement photographer available on ICUs and in hospices, ensure families have somewhere to stay when their children are critically ill, ensure families have somewhere special and comforting to go with their child when they pass away, to spend time with them, in private. So much we wish was in our control.

What we’d like more than anything to come from the devastation our family is living with, is to improve outcomes for children living with congenital heart disease, and more specifically children who have an alteration within their ELN gene, like Lando, Remy & Koa.

Lando, Remy & Koa all have the same gene change within their ELN gene, however; all three children seem to have a varying strain of it.

Right now, there is no genetic diagnosis but we’re so, so, close and I feel our family geneticist has moved heaven & earth, with support of colleagues and friends within the profession to find the genetic cause to our boys’ conditions, but now we need help.

What is elastin (ELN) and its function?

Elastin is one of the most abundant proteins in your body. Elastin’s main function is to allow the tissues in our body to stretch out and shrink back. Your arteries are tube shaped blood vessels that carry oxygen-rich blood from your heart to the rest of your body. Elastin gives your arteries stretchy characteristics that make it easier for your heart to pump blood. With a lack of elastin, it causes your vessels to become thickened, stiff and rigid, when this happens the pressure can cause the vessel to narrow, meaning your heart must work harder to pump the blood around your body, causing damage, overtime to the heart itself. By widening one part of a thickened vessel in children with an alternation or deletion of their ELN gene, you’re potentially pushing the narrowing further along due to the stiffness in the tissues structure.

What we know so far;

• There has been a change in the non-coding region of the ELN gene.

• They have found the link between Lando & Remy.

• Koa’s tissue taken from his first surgery is currently in a lab in Manchester. They’ve extracted the ELN from the tissue and it’s now about to undergo sequencing to confirm the link between all three boys.

• So far, Lando, Remy & Koa will be the only people in the world to be given this diagnosis.

• The diagnosis doesn’t have a name yet.

• I must have the same change in my ELN gene, but it doesn’t affect me as severely.

• ELN needs extracting from me to confirm the genetic link.

So, how do we honour our children and improve the outcomes for other children living with congenital heart disease?

We need vital funds for research. Research provides information and improves knowledge. With this knowledge, scientist/medics can use it to develop new drugs and new techniques, offer alternative treatment plans and options for children.

With the support of our genetics team, we know there are research teams out there who have found a way to replicate the protein needed, although in its infancy, imagine they make a breakthrough, imagine it was 10-15 years later we had Lando, Remy & Koa, imagine a world where there is a drug that can be prescribed that means their vessels act in the way they’re supposed to. Imagine the lives saved or prolonged around the world once we have a diagnosis. Imagine being a small part of that.

We don’t know what the future holds for Remy. What we know is he has a life-limiting condition that has taken the lives of his older and younger brothers. We know he will have many surgeries in his lifetime. We know the affect that has on us as a family and therefore other congenital heart disease families we meet along the way. We want to do our bit to help improve the outcomes for these children, including Remy.

We hope to raise enough to help fund research and make a donation to Rainbows hospice. Thank you so much for taking the time to read our mission, share it and if you’re able to, donate. It really does mean the world & it will make a difference.

With love,

The Fisher Family