Posts: 1,829 | Threads: 41
Joined: Oct 2009
Reputation: 13

  • Administrators
hi my name is lucy and i have 3 children. my second child euan is 2 and last year was diagnosed with a rare condition called cystinosis.

First thing i did was jump online to find out all about it, it was a relief just to get a diagnosis as we had been struggling for 6months to find out what was wrong with our baby (at 6months he stopped putting on weight and stopped growing).

After reading about cystinosis i was shocked to find it was such a serious condition and it really hit me then how sick our child was and what a struggle his life would be. 18months on cystinosis has become part of our lives with the daily concoction of drugs, fluid intake and nappy changes
(cystinosis at this age mainly affects the renal function so euan wees all the time).
We also have endless amounts of hospital appointments, development checks and have had a few hospital admitions as Euan dehydrates real quick!

We are from birmingham and are so lucky we have a childrens hospital nearby.....we know all the staff on the renal unit really well now! their care has been invaluable, however finding other sources of help has been more difficult.

At the time of diagnosis we were living in private rented accomodation, we were told Euan would need a transplant before his teens so made the decision to apply for council housing.
We contacted social services and self refered ourselves, we asked them to come and see us to do an assessment of our needs and got them to write a letter about our housing needs to support our application.

We had to fight for all the information about housing and dig deep to help support our application.
Nobody, especially at the council housing department, was at all very supportive. These agencies are good if u tell them what you want but not very good (i have found) at advising you on what you are entitled to!! we eventually (after a year of constant contact) got a move meaning we now dont have to worry about moving whilst our child is ill or worse in renal failure!!

Euan renally is doing quite well, however yesterday we were told he has an externally rotated femur meaning he will need surgery on that as he gets older! something else to worry about!

well.....theres my introduction, if anyone wants any information on anything id be glad to help in any way i can.

Thank you for listening!!!!

Lucy xxxxxxx

Attached Files Image(s)

Users browsing this thread: 1 Guest(s)