Tuesday, 13 March 2012

3 Year old daughter with juvenile arthritis is only half the fight!

My 3 year old daughter also has arthritis, she has poly articular juvenile arthritis. After dealing with arthritis for nearly 10 years, I had a rough idea of the struggles she would go through, but I didn't realise struggle it is for a parent looking after a child with arthritis. The daily care is something that doesn't bother us, that is something we would do for our children no matter what. The biggest struggle we have is trying to get health care and education specialist to give our daughter the support she really needs.

Arthritis is massively misunderstood in adults let alone children, one health care specialist even compared my daughters arthritis to another child suffering from tonsillitis! These kind of comments really are not helpful, in reality they belittle the daily struggle an arthritis sufferer goes through daily.

Our latest battle is to try and get our daughter a learning support assistant for her at school. and it looks as though it could be a real battle. Plenty of people are saying that she needs the help, but everyone is pointing at each other when it comes to funding this, and no one wants to take responsibility. We are made to feel like a massive burden and at times second class, as we require extra help to get her into the school system. Schooling is a basic thing in life and is something every child needs, all we are asking for is an assistant to help her in the first few months as she gets knocked over very easy, this has left her to struggle to adapt to new surroundings and people.

 After speaking to people in similar situations I realise that as a family, we are not the only ones going through this type of struggle. Because of financial cuts throughout the UK, many people face a struggle to get help and access to services that they really need, many face bigger struggles than we are facing at the moment.

Later in the year, when the Olympics start and you see the UK lit up and glorified, keep in mind that behind the fireworks and celebrities that thousands of real families face a struggle to get the basics in life through no fault of their own. Its families like ours that this government want to pretend don't exist, all in the hope that we don't need any financial help or support. How proud this coalition government must be of themselves.

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6 comments:

Arthritis Pain Relief said...

Such a sad story, I was really touched by your daughter I know God is with her, taking good care of her and helping her to recover in such disease. To go to school is one of the rights of every child. Hope my simple prayers to your family can help. God Bless!

Rae Sheets said...

i am so sorry about your daughter. i do not have her problems, but i was born with severe congenital scoliosis. by the time it was diagnosed there was nothing that could be done for me. being in such pain - not as severe as yours or you daughters - i learned to deal with the pain and do the things i need to do daily.

i can somewhat relate to your struggles with your daughter and your own personal struggles. thots/prayers always for you, your daughter and family!

Grumpy said...

Thanks Rae Sheets, it helps to know that others understand, at times it can feel like we are alone when going through these struggles

Lemon said...

thats a sad story. reminds me of what happened to me,. i was studded and paralyzed for a while.

Chrystal S. said...

great blog! keep on writing get your story out! people need to know of these struggles

hery ozora said...

Great Job, Keep Posting, I will follow Your Blog.
happy Blogging ....