Family's Plea To Get 18 Month Old Matilda To Boston
18-month-old Matilda (Tilly) was a happy little girl until a bout of meningitis made her severely unwell.
Unbeknownst to her parents, Jane and Matthew Mahon, Tilly actually had a disease called Vein of Galen Malformation (VOGM) which is a type of rare blood vessel abnormality inside the brain. Normally diagnosed during pregnancy, Tilly's was so small that it went undetected.
Tilly underwent various complications which was thought to be from meningitis and then later on in the year, she began to press her head against the floor while crawling. An MRI would later find that Tilly had VOGM with Hydrocephalus ("water on the brain").
Speaking to 973FM, Jane spoke about the shock diagnosis.
"We ultimately thought it was only going to be Hydrocephalus," Jane said. "We were quite distraught about that on its own because they'd have to go and put a shunt into her brain, so that's what we were preparing ourselves for, not for this VOGM diagnosis."
"We were at Lady Cilento hospital for three weeks because Matilda stopped gaining weight, stopped eating, was vomiting continuously so they had to try and get everything under control before they could discharge her."
On the 19 March, Tilly will undergo her first round of surgery in Melbourne where they will go into her brain and glue off one of the veins that is forcing the pressure.
Speaking of the future of the surgery and beyond, Jane said: "It's so high risk and that's the part that makes me quite sick in the stomach on a daily basis because we don't know what that looks like."
Jane, Matthew and Tilly's older brother, four and a half year old James, will be travelling with her, but this is only just the beginning.
The best treatment for this disease comes from the United States at Boston Children's Hospital, however, for the total expenses, the family need to raise $180,000.
"We want to go and see a Doctor by the name of Darren Orbach at Boston Children's Hospital," Jane said. "He is one of the world renowned gurus in VOGM and the study that comes out of the United States is more advanced than what we have here."
The Mahon family are raising money to desperately get the help they need for their little girl.
Money raised will go towards treatment, flights (including business class so that Matilda is comfortable on the long-haul trip) and food/accommodation for the family while overseas.
"Anything above and beyond the $180,000 that we don't need, we will donate to the University of Queensland for one of the neurosurgeouns or one of the radiologists that will be doing their PHD," Jane said. "It will be a one off scholarship amount that will help fund their studies."
"We don't have answers at the moment and we won't know until she has her surgery what the future holds for Matilda."
If you wish to donate to Tilly Mahon's GoFundMe page click here. Any dollar amount can help.