Highlighting Cystinosis & Being Honest.

A few weeks ago I recieved a message from a publishing company, interested in my girls story and available to get the story out there and highlight Cystinosis. Didnt think it would do much but any awareness is better than none, well to my surprise we where featured in The Sun newspaper and online via The Sun and Daily Mail. Lovely articles as well with some gorgeous pics of my girls together. Have also been told a few TV programmes might be interested but we are still waiting to hear back. While its nice they highlight the disease and get some awareness out there they never fully understand what Cystinosis is and what it entails 24/7. Most of the time no one even knows the girls are sick and that in itself can be a blessing, they can lead normal lives and be happy little girls. But sometimes, it all gets too much. For me, for them. Medicines every 6hrs including during the night. Near on impossible to do eye drops hourly during the day and preparing the machines/milk feeds over night, lots of nappy changes due to fluid intake. The trips to hospital, the blood tests, the x rays, the tears and tantrums. E getting so upset when retching from afternoon meds or saying her legs hurt or her eyes hurt or asking for the blinds to be closed as the sun is too bright at only 7/8am in the morning. PM always full of cold, sneezing, coughing, not sleeping well. No offence to anyone but until you live it day in/day out they have no idea of what goes on or seem to think these children are going to grow out of it all. If only it was that simple and easy! This disease has NO cure. It takes children away for their parents, loved ones away from families. It can make you blind. The medicine makes you even more sick, gives off funny smells and some children are bullied because of this which makes me very angry. Makes some children not want to take their life saving mediciation due to bullies. Some children have been home schooled due to this as well. I know some people with Cystinosis who are in there 30's and seen as miracles, told they wouldnt live passed their 10th birthdays but still fighting strong, still in some ways suffering from stuff like muslce wasting but healthy in their own little ways too. Some are mothers which again is a miracle, its very hard for anyone with Cystinosis to be a mother and so very dangerous for both mother and child during pregnancy. Its hard knowing your child is likely to be bullied, hard seeing them play with dolls and know deep down they might never get the chance to be a mother and you a Grandmother. Knowing there's a big chance you are going to outlive your child(ren). Know if your child doesnt keep taking medicines kidney failure comes much quicker. A transplant DOESNT cure these people. Cystinosis then affects other organs like the brain, liver etc. If only it was as simple as outgrowing it or getting a kidney transplant. There's simple things in life I cant enjoy like other mums, having your child climb into your bed when he/she is upset or scared or poorly. Mine cant do that due to being attached to milk feeds all night. I dont normally blog such personal stuff but feel like getting some of this out there today. I am so blessed to be a mother I know this, especially to 2 amazing little girls who make my life worth living. I wish Cystinosis didnt exist, I had never even heard of it until E was diagnosed and by then I was 7mths pregnant with PM. Ive lost count of the amount of times Ive had to literally pin them down for nasal tube passings or blood tests or G tube changes, lost count of all the hospital stays. The Drs and Nurses know us all, like a little family in a way. My girls are only young so I know there is so much more to come but we are also hopefull for new medicines, especially the delayed release Cystagon which will only need doing every 12hrs instead of 6 but there's the added worry of the NHS getting hold of it or wanting to. Cystinosis affects people differently. Some seem to have no other underlying issues whereas others do. So in some ways some suffer more than others. I dont like to use the word suffer but when your almost 4 year old cant even walk down the street without being in pain then its needed. E is getting a disablility pram in a few weeks as she's outgrown her normal one. Both girls are having hearing tests done soon as well and we are at hospital again on Thursday for Renal Clinic. Sometimes you feel like you live at the hospital or might as well do. It would be much easier!