Help give baby Mylah a beautiful send off

Hello, our names are Abbey and Jordan, and we are reaching out on behalf of our sister Carly, her husband Tony and their 1-year-old daughter, Mylah, who has recently been diagnosed with a life limiting disease called Leigh’s Syndrome. This diagnosis has turned their world upside down, and they are now facing an incredibly difficult and emotional journey.

 

Leigh’s Syndrome is life limiting & terminal.

Children with Leigh syndrome (Leigh’s disease) have a gene or mitochondrial change that causes nervous system cells to die. This rare mitochondrial disease causes seizures, developmental delays, heart issues and breathing difficulties. It sometimes affects adults. Treatments can ease symptoms, but there isn’t a cure for this fatal condition.

No stone has been left unturned in our quest for a possible cure. From seeking out the chance for participation in clinical trials in the USA, Italy & Brazil to stem cell therapy in Switzerland.

 

Tony and Carly struggled with infertility for many years. They were finally blessed with their baby girl after doing IVF in February of 2024. She is their miracle baby and their absolute pride and joy!

 

Mylah is the most beautiful, brave, fierce and loving little girl, but she now needs our collective strength and support. The road ahead will be long, with frequent hospital visits, appointments, and necessary treatments that will place a tremendous strain on her family-not only emotionally, but financially too.

 

As Mylah’s condition progresses, the family is also facing unexpected costs, such as travel to and from hospital appointments, medication which can only be sourced in the USA, equipment, ongoing medical requirements and other essentials. This is why we are asking for your help. Every dollar raised will go directly to Tony and Carly to focus on Mylah’s diagnosis without the worry of mounting bills.

 

Carly cannot return to her work as a teacher as she needs to be a full time carer for Mylah.

Mylah is immunocompromised & will not be able to attend pre-school. They have had to cancel her first birthday party (Feb 8) due to this risk. The slightest cold, flu or other respiratory disease acquired from others could see her condition spiral quickly as she doesn’t have the energy to fight off disease.

Tony would also like to spend more time with his precious daughter during the limited time they have left.

 

No donation is too small! Your support, whether financial or through sharing this with others, will make an enormous difference.

Thank you so much for your generosity and kindness during this incredibly challenging time.

UPDATE: At 1:38am on May 17th our baby Mylah grew her angel wings She fought so hard for so long, her pain and suffering has ended and she has been set free. In her last moments we listened to The Wiggles, sang to her, did some hand and feet moulds and painted her nails. Daddy and mummy love you so much beautiful bubba, we will see you again one day.