Hanna's Story

Hanna's Story  
My daughter Hanna is 5 years old. Hanna enjoys the things most 5-year-old girls like doing. This includes being outside with her brothers and the neighbor’s kids playing ball, going to the park, playing on the slide and the swings and just hanging out. Hanna can’t always do everything that the other kids can do because she is in a wheelchair. Hanna was born with Spina Bifida.

Spina Bifida is a deformity of the spinal column that occurs in the first 3 weeks of pregnancy. The neural tube does not close completely. There are different types of Spina Bifida. Hanna has a Myleomeningocele. Which means she had an opening on her back at the site of the deformity. Most of the nerves exiting the spinal cord below this point are damage to some degree very much like a spinal injury due to a car accident. Hanna doesn't walk, but a lot of people with Spina Bifida can. Some will need the assistance of a walking stick or crutches. Hanna relies on various contraptions we have at home to get her standing and mobile.

There other complications that go hand in hand with Spina Bifida – hydrocephalus, orthopedic problems with feet & hips, incontinence, scoliosis, other spinal cord deformity. Some people may be affected greatly by these complications and others hardly at all. Approximately 1 in 800 babies in Australia are born with Spina Bifida. Taking folate before and during the first trimester of pregnancy reduces the chances of your baby having a neural tube defect.

From the day Hanna was born Bruce and I wanted a "normal life" for our little girl. Our mission in life was to ensure Hanna would become confident, physically strong and fit and healthy to be able to participate at kinder and school and sports and to be truly independent. So I took it upon myself to speak to lots of therapists and other parents to find out who could help us achieve this. By the time Hanna was three she had had many surgical procedures, many with complications, and it felt like we had spent most of her life at Monash. I desperately wanted to get her away from the doom and gloom of the doctors and therapists. Even at our Early Intervention program I felt that they had already made the decision of what Hanna would be capable of achieving in her lifetime. Bruce and I just wanted Hanna to be given the opportunity to achieve without any preset boundaries. And Hanna is!

I was first given a 'Heartwell' brochure when Hanna was two from our physio. During the next 12 months I met two families whose daughters were attending the program. Both of the mums gave glowing reports on the huge improvement physically and emotionally that their girls had made. And I decided this is what we needed to ready Hanna for school. It stated in the brochure that they took children from 4 years of age, but would they take Hanna who was small for her age and used Makaton to communicate? I decided to tackle that hurdle when we came to it. I asked our physio to refer us and waited patiently for the following years placements. I was ecstatic when our letter came in the mail to say we had a position for 2004.

Well Hanna has been at Heartwell for 18 months. The first 6 months Hanna spent in and out of hospital. But she has made up for it in the last 12 months. Hanna has learnt to throw, is learning to catch, and is now commando crawling all over the house. Hanna has the strength and confidence to slide out of bed and off the lounge. Hanna is now strong enough to push herself around the shop and up our court to go and play with the other kids. Hanna now wants to participate with the other kids not just sit and watch. Hanna feels special when she's at Heartwell. She receives lots of encouragement and has fun. I believe that Hanna will leave Heartwell with a love of being active and wanting to be independent because she will have the strength and self-confidence to do so.

I can't thank Scott and Julienne enough for the wonderful program they run. And for the hard work they do finding sponsorship for our children from businesses in Melbourne.

Katrina Hartley (Hanna's mum)


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