There are some women who just move you. Extraordinary women such as Joanna Avramides, who yesterday on Easter Sunday jumped on a plane to the US. She’s starting an inspiring journey, which has been in the works for a long time. The Avramides family are taking their four-year-old daughter Matilda (Tilly) to St Louis Children’s Hospital in Missouri so she can have a special surgery called selective dorsal rhizotomy...
After being given the all clear at birth, Tilly was diagnosed with spastic diplegia cerebral palsy when she was nine-months-old. “I knew something was wrong. She was missing the milestones that I knew to expect from my firstborn. I was met with the response that, “a lot of second time mothers are neurotic, she’s fine”. It was at this time that I decided to trust my gut instinct, over what the doctors were saying. I searched around for another doctor who would do further tests, and eventually when she was nine-months-old we were told that yes, it looked like she had spastic diplegia cerebral palsy,” says Avramides.
The surgery Tilly is about to undergo is a spinal operation, which cuts the nerves carrying the most extremely spastic signals, leaving other nerves intact. “She will then have a second surgery a week later to have her tendons lengthened in her hamstrings and heels. Tilly’s body will feel completely different post-surgery, so it will be a really huge adjustment for her. We will stay close to the hospital for another three weeks to learn new rehabilitation exercises while Tilly gets used to her new body,” says Avramides. When they return home to Sydney, Tilly will be doing five days a week of rehab for six months, and then another six months of rehab four days a week.
The beautiful Paddington-based mother grew up outside of Belfast in Northern Ireland. When her first daughter Olive arrived, she was 25 and working in her dream job as an assistant buyer at [luxury fashion boutique] Land’s End. She’s since had two more children, Tilly and then Jack. Motherhood has given her perspective and also taught her the importance of being honest and open. “Don’t sweat the small stuff. Everyone has something that keeps them awake at night, and the more open you are with what you are dealing with, you find people opening up in the same way and that’s where you find your support,” she says. Read on to find out more about this remarkable mother and the journey ahead for Tilly.
How would you describe yourself in three words?
An average Jo!
What has motherhood taught you so far?
I had Olive when I was 25 when all my friends were still single, so I really had to grow up on the job. I guess what I realise now is that life is a constant learning experience, you’ll never know it all or know what to expect.
How do you juggle three children?
By accepting help! When I just had the girls, I found it hard to leave Tilly with anyone, and had major mother guilt when I did. We have an amazing nanny called Duck who we love and is part of our family now. By accepting help, I am able to totally focus on what I am doing with each child and not be pulled in a million directions.
What’s a typical day like for you?
No day is typical but there are a few constants. We always try to squeeze in some morning cuddles before school. Jack usually tires of that quickly and brings me his shoes and says “OUTSHIDE”. Next is school drop off for Olive and then it’s some sort of therapy for Tilly. Physio, occupational therapy, speech therapy and behavioural therapy at Therapies for Kids in Annandale, which has become our second home. After school we always try to be outside as much as possible. Either the beach or park, anywhere they can wear themselves out. Then it’s your typical dinner, bath, book and bed, always ending with Olive climbing into Tilly’s bed for another snuggle and off to sleep.
Can you talk us through Tilly’s condition? When did you find out she had cerebral palsy?
I had a fairly normal pregnancy with Tilly. I had a bit of a cold in the first few weeks, but Olive was in daycare, it was winter and we were all a bit snotty. No big deal. At the 30-week scan, the doctor noticed that there was some swelling on the left side of the brain. We went back and did further blood tests, and it turned out that the “cold” was actually a primary infection of Cytomeglovirus or CMV. Of course, the first thing I did when I heard this was go on Dr Google, and I was petrified by what I read. Almost 2000 babies are born with congenital CMV every year in Australia. Roughly 380 of these will have a permanent disability, including hearing and vision loss, developmental delays, cerebral palsy and epilepsy. In rare cases the infection can be fatal. Transmission is through bodily fluids, so it was likely I had contracted it from kissing Olive on the lips, or sharing a spoon with her.
The rest of the pregnancy is a blur. Levels of anxiety surrounding the unknown were very high, but I don’t really remember the specifics. I guess self-preservation kicked in so I could just move forward. Then, when Tilly was born she did not have any of the signs of Congenital CMV. She was perfect. We named her Matilda which means “powerful in battle”. She passed her SWISH newborn hearing test. We were in the clear… when she was nine-months-old we were told that yes, it looked like she had spastic diplegia cerebral palsy.
She is now nearly four years old. She can crawl by herself, but cannot stand or walk unassisted. Although dyspraxia makes her speech unclear, you can tell she has a lot to say and is so emotive. She has to take Baclofen every night, and have Botox injections every three months in her legs just to fight the spasticity. Her progress has stalled and this is why I started to look into alternative options.
What has been the most challenging part of managing Tilly’s condition?
Christian and I often say to each other that we wouldn’t change Tilly for us, but we’d change her for her. I hate seeing her in pain and being frustrated with her own body. That’s the hardest part.
What’s your advice to other parents who have children with cerebral palsy?
The time before diagnosis is the hardest. Once you know what you are dealing with, you can start early intervention and it’s here that you can meet other mothers and carers who will become your lifelines. The people with whom you can be truly honest, when you are not feeling so “inspiring” or “strong”. Take care of yourself. Take a break from therapy and enjoy your child.
What makes you smile most in life?
Seeing my children learn and achieve new things, and how that makes them feel.
What makes you laugh most in life?
Right now it’s the WhatsApp group I have with my sister and brother, who both live overseas. Lots of taking the piss of our parents. I’m sure Christian and I are giving our kids enough ammunition that they will be doing the same thing in 30 years.
“ Everyone has something that keeps them awake at night, and the more open you are with what you are dealing with, you find people opening up in the same way and that’s where you find your support ”
What are you most grateful for in life?
I am most grateful to have three beautiful, healthy, happy children. I am so grateful to live in a country where we have the ability to give Tilly the care that she needs.
How do you and your husband support each other?
We have a date night every single Thursday night, even if we are having an argument! We laugh a lot. Christian is an incredibly practical person by nature. He always tells me not to focus so much on the problem, but to concentrate on the solution.
How do you explain Tilly’s condition to her siblings?
To Olive and Jack, Tilly is just Tilly. It was only when Olive went to school that questions from other, understandably curious, kids started to upset her. The way I explain it to Olive, and any other kids that ask, is that Tilly’s brain sends her legs the wrong messages.
A lot of children who have siblings with special needs end up working in a caring profession – whether that be a physiotherapist, or a nurse, or a doctor. I can see how this happens. Olive by nature is a very sweet, empathetic person. She has so much patience beyond her years, always walking at Tilly’s pace and encouraging her literally every step of the way. Jack (who calls Tilly TITTY), brings Tilly her AFOs (her foot orthotics) and frame when we are getting ready to leave the house. I think Olive and Jack’s lives will only be enriched by having Tilly as their sister. They meet and play with kids of all different abilities and backgrounds at Tilly’s different therapies.
What’s your approach to health and wellbeing?
It depends what day of the week it is! If it’s Monday, I’m in my new activewear, drinking a tumeric latte and on my way to Flow Athletic. Come Wednesday, I’m on the sofa watching Ex On The Beach with a couple of glasses of wine and a cheese toastie! I know I feel my best after a run, but to be honest in the lead up to the surgery it just hasn’t been a priority.
What are some vivid memories of your childhood?
I grew up just outside of Belfast in Northern Ireland. I have an older sister and a younger brother. My most vivid memories are of our family holidays. We would all pile in our car and drive to the South of France, and listen to the same Right Said Fred tape on repeat. I loved having uninterrupted time with my dad, who worked so hard in our childhood. My brother, who is a film editor, recently gave me the best present I have ever received. He had found all our old family videos – literally hours of footage – and edited it together. All the Christmas’, birthdays, holidays, and the odd teenage confessional videos. Heaven.
What did your own mother teach you about life and motherhood?
We lost mum in 2007 to multiple myeloma. During the five-year period of her illness, she displayed sheer determination in maintaining normality and as a family we dealt with her illness by being open. She made sure that as a family, we weren’t defined by her illness. We laughed a lot and maintained our sense of humour even in the darkest of times.
Did your career change after you became a mother?
I found out I was pregnant a week after landing what was my dream job as an assistant buyer at [fashion boutique] Land’s End. I went back casually in-between pregnancies, but after Tilly’s diagnosis I decided to fully focus on all the early intervention therapies we were doing. I would love to go back to work when all the kids go to school, and hopefully it will be something to do with children’s fashion.
How would you describe your approach to parenting?
I am genuinely just trying my best. People often say to me, “I don’t know how you do it”, or “You are so strong”… but I am just doing what any mother would do for their child.