Ellizabeth 25 – “I found out I was pregnant with Alleighah (pictured) at 35 weeks. I hadn’t really gained weight as I carry from behind and I still had my menstrual cycle. I had an ultrasound that day and she was perfectly fine. Two days after I found out I went into what they call shock labour so they stopped my labour and I had a cardiac arrest on the table and Alleighah had a stroke.
We didn’t know anything was wrong until she was 3 months old. She wasn’t doing the signs we thought she should be doing and the paediatrician said she was just a slow developer and that she would improve but at 6 months there was no improvement. We had a CT scan done and they said she had fluid on her brain and she possibly needed a shunt. We then went to Mater Hospital, saw a cardiologist, had an MRI and we found out that she had lost three quarters of the right side of the brain from the stroke in utero which is the movement side.
I was 17 at the time and the neurologist basically said to us that she has Cerebral Palsy, she has 4 different types of Cerebral Palsy, she has epilepsy and was having little fits. I had no idea what Cerebral Palsy was and asked him to explain it to me. He said she will do nothing that requires movement so she will never sit, crawl, eat, nothing. She will be more or less a vegetable. I said ‘no she will be ok’ and he put his hand on me and said ‘no….she won’t, you need to understand that’.
So we came home, researched CP and started speech therapy, she does hydrotherapy, physio, she did kineisiology for a little while. She hits the milestones, not at the exact time and she does it with so much determination. When she first started rolling over she was one and she has lost the left side of her body and she kept getting her left hand stuck under her arm. I’d automatically pull it out but she kept doing it herself and wouldn’t let us help . Once she did it she kept repeating it over and over until she got it and that’s how she does everything. She works hard at it. She’s amazing.
Sometimes we have people say to her face in the street. ‘Let your mummy put you down so she can carry your brother and she’ll sign ‘I can’t walk yet’ or ‘Im trying but I can’t yet ’ and her brother usually says ‘She has CP you know so she can’t walk yet but she has a cool wheel chair.’ I’ve always been open with them. They both know what they have. Curtis 6 has Aspergers Syndrome. I have inflammation of the heart. I’m actually getting tested for MS at the moment but I’m strong and I know that I can do it.
I work four jobs. I’m the carers representative for Carers NSW. I won a carers award in 2013. I was involved with the NSW Carers strategy and my passion lies with carers and disability. The carers strategy was launched last year and actually Alleighah and I are on the cover of that. I studied in disability, community services and counselling and I want to go into being a counsellor for parents at first diagnosis of kids because there’s none really specialising in that. I also work for Salvos, so Salvos Connect with emergency relief. I’m chair of the Interagency Advisory Council for young carers of NSW. Plus a few other things. I run two support groups for carers for parents from all walks of life where we just get to talk. It’s great for carers as we get to talk about the different services and what’s best for us. It really helps, we all know what each other is going through emotionally and how awesome it is when somebody hits a milestone when it’s not supposed to happen.
Alleighah’s just started dance classes, we have a new walker to help accommodate for it because the other one had stuff in front so she couldn’t do her kicks and it even has light up wheels at the back. We’ve just ordered a communication device so she can talk through it. We do sign classes which helps Alleighah improve but also helps Curtis sign with his sister…they have an excellent bond. Alleighah’s just had her 9th round of botox in her arms and legs which releases the spasistic muscles so it helps her not be so stiff.
All the years I’ve loved helping other people and referred people to find funding or respite for people who needed it. Now we’re just understanding, I really do need to ask for help and that’s a big thing for me to overcome but it’s for her. It’s to help fund a wheelchair accessible car which cost around $60k. There is no way as a single mum that I can afford that. With her automatic wheelchair coming which we’re trialling now getting ready to buy one, Without one I wouldn’t be able to take her places. I would have to go in the manual wheel chair which is restricting, I don’t want to restrict my children from anything.”
(If you are in a situation where you may be able to help please see links below.)
https://www.facebook.com/Alleighahsjourney?fref=ts
http://www.gofundme.com/xg27z79e
We didn’t know anything was wrong until she was 3 months old. She wasn’t doing the signs we thought she should be doing and the paediatrician said she was just a slow developer and that she would improve but at 6 months there was no improvement. We had a CT scan done and they said she had fluid on her brain and she possibly needed a shunt. We then went to Mater Hospital, saw a cardiologist, had an MRI and we found out that she had lost three quarters of the right side of the brain from the stroke in utero which is the movement side.
I was 17 at the time and the neurologist basically said to us that she has Cerebral Palsy, she has 4 different types of Cerebral Palsy, she has epilepsy and was having little fits. I had no idea what Cerebral Palsy was and asked him to explain it to me. He said she will do nothing that requires movement so she will never sit, crawl, eat, nothing. She will be more or less a vegetable. I said ‘no she will be ok’ and he put his hand on me and said ‘no….she won’t, you need to understand that’.
So we came home, researched CP and started speech therapy, she does hydrotherapy, physio, she did kineisiology for a little while. She hits the milestones, not at the exact time and she does it with so much determination. When she first started rolling over she was one and she has lost the left side of her body and she kept getting her left hand stuck under her arm. I’d automatically pull it out but she kept doing it herself and wouldn’t let us help . Once she did it she kept repeating it over and over until she got it and that’s how she does everything. She works hard at it. She’s amazing.
Sometimes we have people say to her face in the street. ‘Let your mummy put you down so she can carry your brother and she’ll sign ‘I can’t walk yet’ or ‘Im trying but I can’t yet ’ and her brother usually says ‘She has CP you know so she can’t walk yet but she has a cool wheel chair.’ I’ve always been open with them. They both know what they have. Curtis 6 has Aspergers Syndrome. I have inflammation of the heart. I’m actually getting tested for MS at the moment but I’m strong and I know that I can do it.
I work four jobs. I’m the carers representative for Carers NSW. I won a carers award in 2013. I was involved with the NSW Carers strategy and my passion lies with carers and disability. The carers strategy was launched last year and actually Alleighah and I are on the cover of that. I studied in disability, community services and counselling and I want to go into being a counsellor for parents at first diagnosis of kids because there’s none really specialising in that. I also work for Salvos, so Salvos Connect with emergency relief. I’m chair of the Interagency Advisory Council for young carers of NSW. Plus a few other things. I run two support groups for carers for parents from all walks of life where we just get to talk. It’s great for carers as we get to talk about the different services and what’s best for us. It really helps, we all know what each other is going through emotionally and how awesome it is when somebody hits a milestone when it’s not supposed to happen.
Alleighah’s just started dance classes, we have a new walker to help accommodate for it because the other one had stuff in front so she couldn’t do her kicks and it even has light up wheels at the back. We’ve just ordered a communication device so she can talk through it. We do sign classes which helps Alleighah improve but also helps Curtis sign with his sister…they have an excellent bond. Alleighah’s just had her 9th round of botox in her arms and legs which releases the spasistic muscles so it helps her not be so stiff.
All the years I’ve loved helping other people and referred people to find funding or respite for people who needed it. Now we’re just understanding, I really do need to ask for help and that’s a big thing for me to overcome but it’s for her. It’s to help fund a wheelchair accessible car which cost around $60k. There is no way as a single mum that I can afford that. With her automatic wheelchair coming which we’re trialling now getting ready to buy one, Without one I wouldn’t be able to take her places. I would have to go in the manual wheel chair which is restricting, I don’t want to restrict my children from anything.”
(If you are in a situation where you may be able to help please see links below.)
https://www.facebook.com/Alleighahsjourney?fref=ts
http://www.gofundme.com/xg27z79e