Milly Wagenaar progressing well as Good Friday Appeal approaches

IN THE lead up to the Good Friday Appeal on April 3, Sentinel-Times caught up with young Royal Children's Hospital (RCH) patient Milly Wagenaar at home in Wonthaggi, hearing from her mum Amy and nan Merran Sice about the ongoing care The Royal Children's Hospital provides.

Now heading towards her third birthday, Milly’s story was first reported in this paper two years ago after she underwent a life-saving brain operation at RCH aged 11 months, necessitated by a brain lesion that led to her suffering up to 70 seizures in a day.

At just four months of age, she had been diagnosed with a severe case of Focal Cortical Dysplasia, a brain condition causing seizures, having undergone scans at RCH.

Following her surgery, Milly remained in the hospital for six weeks, undergoing intensive rehabilitation, still having weakness on her right side.

The care she has received at RCH inspired the creation of Milly’s Mission, a family team that is gearing up for its second Run for The Kids appearance and will be decked out in bright pink t-shirts featuring a photo of Milly.

Milly will be there for the event that serves as a Good Friday Appeal fundraiser, travelling in style in her pram pushed by her grandfather, and possibly walking some of the 5km distance.

Mum Amy is again braving the 14km course, while Milly’s dad Brett thought better of that after being underprepared for that distance last year.

“He didn’t really train and thought he could wing it, but he was in quite a bit of pain,” Amy said, Brett, conceding he has got more sensible this time.

He’ll take on the 5km distance, with four other Milly’s Mission members, while Amy’s sister-in-law and a family friend join her on the long run.

Amy has set herself the goal of completing the distance in an hour and a half, something she has been training for.

Milly continues to see her neurologist at RCH every six months, as well as a team in the rehab area every nine months that includes a pediatrician, a physiotherapist, an occupational therapist and a speech therapist.

“It’s ongoing if she needs tests done,” Amy said, Milly having had minor seizures over the Summer period, the situation currently being monitored.

“The good thing with Royal Children’s is we have our ongoing appointments, but if something happens in the meantime, we can just contact them,” Amy said.

Milly also has a team locally, consisting of an occupational therapist, speech therapist and physiotherapist, with strong communication between them and those at RCH.

The hospital maintains an action plan for Milly with medical professionals, such as ambulance paramedics or those in the Emergency Department, locally able to call RCH and receive guidance on the best course of action if specific situations arise.

While acknowledging times are tough, Amy stressed the importance of donations to the Good Friday Appeal, encouraging people to give anything they can afford, with all contributions helping.

“You can see where the money goes when you’re down there,” nan Merran said.

Along with the high-quality medical care and support for patients, RCH also looks after their families.

That includes a family hub featuring a large play area, kitchen facilities, couches and private rest spaces.

Care even extends to kids receiving Christmas presents, and hospital volunteers are on hand to get parents a therapeutic coffee or give them a rest, with Starlight representatives available to sing and distract kids from various medical procedures.

Merran remarked that doctors and therapists are in and out all day, checking on patients.

“You’re constantly looked after; I can’t praise them enough,” she said.

“We’re forever grateful to the hospital and the people who donate,” Amy added.

Run for the Kids takes place this Sunday, March 29, with entries through runforthekids.com.au, or donations can be made to the Good Friday Appeal at goodfridayappeal.com.au