A walk for Iris.

This is Iris's story and the reason why I am walking 12 marathon's in 12 days starting on the 12th December 2023.

On the 9th June 2022 family life changed forever for my nephew Matthew and his wife Sophie....

Iris was born 10 weeks early and spent the first 6 weeks at Warrington neo natal receiving treatment for sepsis, jaundice, ultrasound brain scans and several lung puncture procedures. Iris came through and all seemed routine until day 19 when after an another routine ultrasound brain scan Iris was diagnosed with Periventricular Leukomalcia (PVL). This is a brain injury normally found in premature babies

PVL is injury to the white matter of the brain which is responsible for transmitting information between the nerve cells and spinal cord, as well as from one part of the brain to the other.

Iris‘ initial scan showed several cysts on the white matter of her brain which over the coming weeks joined together to form bigger cysts. PVL causes damage to the nerve pathways that control motor movements, resulting in muscles that are tight, spastic or resistant to movement. This, Matt and Sophie were told would very likely result in cerebral palsy for Iris along with potential learning difficulties and other developmental problems.

Despite this devastating diagnosis Iris continued to thrive during her time in neonatal resulting in her being finally allowed to come home at 6 weeks old, 4 weeks earlier than her due date.

Once home, it quickly became apparent the issues that PVL was causing for Iris. Matt and Sophie noticed that Iris was very stiff in her legs, this was something they noticed a week of her being home. Iris would straighten her legs out and raise them in unnatural positions. Although Matt and Sophie were told it was a ‘wait and see game’ it was expected and no less devastating to see the affects manifesting so early.

On the 12th September at just 3 months old, Iris had an MRI scan which would give Matt and Sophie a clearer picture of the damage to her brain. As parents they naturally hoped for the best and at the same time unfortunately the scan confirmed the ultrasound results that Iris had PVL affecting both sides of her brain. It was confirmed she had Grade 4 cystic bilateral PVL.

From the beginning, Matt and Sophie were informed about the importance of early intervention for Iris in terms of therapy and how it is essential in giving her the best opportunity for her brain to rewire which would optimize her physical and mental capabilities.

So… That brings the story right up to date and where the family are 18 months into Iris’ journey. Iris had her diagnosis of cerebral palsy in February 2023 at 8 months old so the reason why I want to help Iris on her cerebral palsy journey is because of her need to have specialised equipment which aids very specific therapy to develop and improve Iris's motor functions. This we know will give Iris the best possible life moving forward.

Sadly, most of the therapy and equipment Iris needs is not available through the NHS. This is why I am walking 12 marathons in 12 days

(314 miles in total) to help Iris have the best possible start in life.

To also raise awareness of the condition PVL and raise the funds required for the specialised equipment.

Matt and Sophie would give the world to Iris and if there was anything more they could do they would. As a parent to see your child struggling and to picture their future as anything other than the happiest is something Matt and Sophie would not want for anyone.

This is why I am taking on this walk and hoping to raise money, to give Iris the best possible chance to reach her full potential , living as happy and normal life as possible.

Any donation big or small is greatly appreciated.

The proceeds will go to Iris and a wonderful Cerebral Palsy Charity "Stick N Step" where everyone takes great care of Iris.

Many thanks Ian.