Avalon was born in 2011 at 30 weeks gestation, via an emergency caesarean section. Due to her low birth weight of just 1024 grams and a severe infection, Avalon suffered damage to the white matter in her brain. This is a condition known as Periventricular Leukomalacia (PVL), which is commonly fatal to premature babies.
Avalon spent eight weeks in the NICU and SCBU units in total. She was the 'Feisty' child according to the nurses, which we came to realise was a blessing, as she will need all of that strength for the life journey she is on. By the time Avalon left hospital she was 37 weeks gestation and weighed 2.2 kg. This weight is half the weight of a healthy child born at full term. When Avalon was one year old she was diagnosed with Cerebral Palsy spastic diplegia and dystonia. Avalon's condition affects one arm, both of her legs and her balance.
From 33 weeks gestation, Avalon has been seeing Physiotherapists, Occupational Therapists, Speech Therapists and Specialty Therapists. She has responded well to all of these therapies and really enjoys the interaction and the feeling of achievement she gets.
As parents, we are constantly on the lookout for treatments and specialised equipment that will give Avalon the best opportunities. In 2013, we discovered a treatment centre called NAPA Center, in Los Angeles. The centre specialises in Intensive therapy, which utilises a special suit. Three weeks of therapy at The NAPA Center is the equivalent to twelve months of traditional therapy, and combined with all of the regular therapies she requires, the results are very encouraging. In March 2014 Avalon completed a three week Intensive Model of Therapy (IMOT) with outstanding results. If we can continue to provide these intensives three times a year, along with the specialised equipment and regular therapies she requires, Avalon will have a very good chance at gaining some valuable independence in her life.
In November 2017, Avalon had an incredible surgery in the United States called Selective Dorsal Rhizotomy (SDR). This surgery has permanently removed all of the muscle tightness in her legs that cerebral palsy has caused. The surgery has greatly reduced any chance of muscular and joint deterioration in the future, allowing Avalon to live in a body that will not wear down and cause her immense pain. The cost of the surgery including air fares (travel), accommodation and living expenses was AU$130,000.
Following the surgery Avalon has started her extensive rehabilitation program. This involves years of regular and intensive therapy, including a special trip to Step By Step therapy in New York, USA. The therapy will allow her to grow muscles that have never previously been used due to the muscle tightness, and to gain the strength she needs to continue forward in her ‘new’ body. Our annual therapy cost is now more than $60,000 which is virtually impossible to meet, but how can we put a price on her independence.
This opportunity for Avalon was an amazing one and she was extremely lucky to have been selected after meeting strict criteria. With the correct rehabilitation, Avalon will achieve amazing things!!
We thank you for helping Avalon to have that chance xx
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Marayke Jonkers, 36, is a retired Paralympic medal winning swimmer, paratriathlete and founder of Sporting Dreams, a grants program which helps athletes with disabilities. Unfortunately after 20 years as an elite athlete Marayke has been diagnosed with an overuse injury to her arms and now n...