NZ absent on cerebral palsy operation

10/03/2013 11:50:14 a.m.

Sebil wrote:

We would like to donate some money for Caly.

10/03/2013 7:51:34 a.m.

Debbie Waldron wrote:

What an amazing couple, who are giving their child every opportunity in life. I loved their positive and pro-active attitude. What astounds me is reaction from our health services. Where is commonsense in all this? I recognise that it is not easy for our health professionals but you are the ones in the best position to advocate for justice and the best deal for our most vulnerable. I do worry about what might be happening for all the other people who may not have the same resources available to them as this family. I will be watching the follow up to this story with interest

9/03/2013 9:04:52 p.m.

Mary wrote:

My daughter has moderate severe C.P. spastic diplegia. SHe has had major tendon realeases at 22 moths, 3 1/5 years, 5 1/2 years. She has had numerous stress fractures due to poor nerve conduction to her lower limbs. Her bone formation is that of an old lady. Walking unaided at 2 was impossible. The break through operation at 15 years has her still walking at 32. If I hadn't done massive physio on her whe would not have been where she is today. SHe is a very stubborn young lady. The physio you get once a week is no where enough, to get a child to walk. She will end up in a wheelchair....so what! she was walking at the best time in her life...as a teenager. That was her comment when her pain relief fell out after her last op. Thank you Liz Lee, Dr Archie Kerr, Mr Simmonds, Mr Nicol and all the physios, speech, O.T.'s etc

8/03/2013 9:18:54 p.m.

Ram wrote:

I have a son aged 4 years who is also diagonised with CP. I would be happy Mickayla if you could let me know what "cramp busters and other techniques to deal with pain in a child who had CP. I would like to try all these techniques hope this helps my child and make him walk.

8/03/2013 8:25:45 a.m.

alison wrote:

healthcare in NZ in general is going to the pack. I dont have a child with cerebral Palsy but do have one with other conditions and it is amazing in this day how they get lost in paper work delaying treatments and going undiagnosed as they try to keep costs down. It inevitably costs more in the long run to fix symptoms than treat the condition at the start. I dont blame drs and nursing staff at all as I feel they do an amazing job with very limited funds. I do get annoyed at the nonsensical cost cutting from govt with a bandaid mentality at the bottom of the cliff which costs much more than catching them before they fall.

7/03/2013 9:02:28 p.m.

Angela Muncaster wrote:

My daughter Isabella is 2 years old, she has mild cerebral palsy. She like Kali is a happy independent young lady. Her right side is affected hand and leg also her speech. I cried watching this and reading people's comments. Health system sux not much support and you feel like your in no mans land as a parent. We celebrate every little milestone she achieves as little as pushing a button or waving and trying to hold something in her right hand. Kia Kaha, hope all works out for you Kali xx

7/03/2013 7:13:07 p.m.

mike requadt wrote:

St. Jude’s hospital ST. Louis MO, is literally nest door to ST. Louis hospital, and provides free of charge treatment to children with accommodation and transportation provided. From their web site: All patients accepted for treatment at St. Jude are treated without regard to the family's ability to pay. St. Jude covers all costs of treatment at St. Jude beyond those reimbursed by third-party insurers, and total costs at St. Jude when no insurance is available. St. Jude also provides assistance with transportation costs and local living expenses during treatments. I used to reside in St. Louis Metro area. They are quite the charity: http://www.stjude.org/stjude/v/index.jsp?vgnextoid=f87d4c2a71fca210VgnVCM1000001e0215acRCRD

7/03/2013 3:52:23 p.m.

Cecilia Hawke. wrote:

I to have cerebral palsy. Your programme made me cry. How I wish with all may heart that I could have been given such a wonderful chance to walk. I did not walk until I was about seven and continued to walk until 48. For may years I did not know I would finish up in a wheel chair, boy what a shock that was.
Cerebral Palsy can end with many different end complaints.

7/03/2013 2:40:54 p.m.

John Brett wrote:

My daughter Angela had similar or worse Cerebal Palsy, and has largely overcome the handicaps of the condition. She has succeeded in her life such that she now lives and works overseas as a Scientist, and has a full and happy life. I have asked her to view this programme and make comment- I believe that these parents have been given some false expectations for their daughter, and might benefit if they shared experiences with others

7/03/2013 11:18:20 a.m.

jan wrote:

The health care situation in New Zealand is shocking. No help for the condition, so they find a way to sort it, then get told they won't get the help they need when she gets back. I suggest (tongue in check here people) they have have some sort of accident, so the ACC could fund them. Eg stupid people who drink drive and get damaged, get physio help for free. Hey Mickayla, this girl has a chance to be more pain free and normal than if left to the system we have now for her. Don't let your attitude rain on her parade. I bet if the operation was available for you, your parents would of gone for it, to prevent you from years of pain.