Lily is our hero! Let's help her achieve her full potential!

Our lives were made brighter by the birth of Lily Ella Ford on the 5th October 2020 in a year that the world was overwhelmed by a global pandemic. Lily was unique from the start as she was born with a port-wine stain over the left part of her forehead and whilst initially concerned, her family and friends very quickly learnt to love her inquisitive nature, her determination and chattiness! Shortly after her birth, a trip to the Paediatrician revealed that her stain carried the risk of neurological complications, which only time would tell. Sadly just after she turned 3 months old Lily had multiple seizures and a CT scan confirmed the diagnosis of Sturge-Weber Syndrome. This is considered a sporadic, congenital, neurocutaneous syndrome involving the skin, brain, and eyes, with an estimated prevalence of 1 in 50 000.

And so our lives stopped while we tried to come to terms with what this meant for our little girl… and to be honest we still don’t know what the future holds but what we do know is that we want to give Lily the best chance at reaching her full potential. We believe that a loving and nurturing environment together with a great medical and rehabilitative team can go along way in helping Lily out with any difficulties that may pop up on this less-traveled road.

Lily spent two weeks in Starship hospital with her first admission in January 2021, where her excellent medical team worked to gain control of her seizures. She has been in an ambulance, been airlifted via helicopter, had multiple EEGs, CT scan and an MRI. Prior to the onset of her seizures, she had already had consultations with a Paediatrician, Specialist Ophthalmologist to monitor for glaucoma in the left eye and two Plastic Surgeons to discuss the laser that she will require on her port-wine stain in coming months. Through all of this Lily has been our guiding star – despite all that she has been through, she continues to gurgle, chat to and charm all of those around her. We are blessed by her strength and presence in our lives.

Despite our intense love for our Lily, we are becomingly increasingly aware of the huge financial needs her condition may create. She will require ongoing and intensive rehabilitation and regular specialist visits among other things. We are ready! But would appreciate any positive thoughts and support that those around us are able to provide.

We believe that you are destined for great things Lily and will do absolutely anything in our control to get you there! Thank you for standing with us.

A heartfelt thank you to all that have made a donation in supporting Lily. We are truly grateful and humbled by your generosity and kindness.