Welcome to Leo’s go fund me!

Our names are Hannah and Rich or ‘Leo’s mum and dad’. We are hoping to raise funding for our son Leo, along with awareness of his rare genetic condition, KCNB1.

Leo is 3.5 years old and loves balls, balloons and bubbles as well as dancing to music. He will say ‘Hello’ to anyone he sees and babbles very loudly when you’re having a conversation to make sure you hear him too. He gives the best cuddles, showing affection to all around him.

Despite all of the above, due to KCNB1, Leo faces debilitating challenges daily including Global Developmental Delay, Epilepsy (Absence, Focal & Nocturnal), Mobility Issues, Hypotonia, Low muscle tone, Speech Delay, Excessive drooling, Sensory issues, Aspiration Risk, GI Issues, Sleep Disturbances and issues with Fine & Gross motor skills. These challenges therefore mean Leo requires continual 1:1 monitoring 24 hours a day, which has meant that I (Hannah) am his full time carer, while dad works full time to support us both.

To enable Leo to develop and have a better quality of life, Leo requires various therapies and equipment. This can include physiotherapy, speech therapy, occupational therapist and specialist equipment, most of which comes at a personal cost to our family. We are doing our best to raise funds through Rich’s work as well as arranging a charity football match (other events are being discussed also). We plan to add regular updates here, go through Leo’s birth story and the progression of his condition/symptoms from birth to today.

Words cannot describe how we feel about our Leo. He is our warrior, and he brings so much joy to us. He has taught us so much and we are so grateful to the KCNB1 community we have found and are able to share our experiences. We will continue to be his voice and celebrate every milestone no matter how small.

Any donation you can spare will help us to get him the equipment and therapies needed to enable him to live a fuller life, so thank you so much for taking the time to read and contribute.

EVENTS:

LEO’S FOOTBALL MATCH

We are in the process of organising multiple events to help us raise money for Leo’s therapies and equipment. Due to his love of balls, what better way than a football event? There will be a bake sale, stalls and of course a football match that you donate to play in. We look forward to seeing everyone there and hope that if you are free you can join us! For details see click this link !

SNOWDON

Our second event will be a walk up Snowdon in September 2024. Aunty Aimee along with any others who want to join her will be taking a 7 hour route up and down the mountain. She has never done anything like this but the challenge is well worth it to raise money for Leo!

She will upload photos of the journey and looks forward to receiving your support.

BOWLS

We are also look at a potential bowls match - details to follow.