Lily is 7 and has been diognosed with osteogenesis imperfecta type 4. Her journey started 19 months ago when she woke up one morning and said her groins where hurting. I just thought as a mother it was just" growing pains" so just kinda ignored it and said it would get better. Lily carried on in pains for a few weeks so I took her to the doctors to get her checked, he ran some tests and sent her for xray which showed her hips where fine! So the doctor said it was just growing pains and we was sent away and told to take general pain medication. Lily continued to still being in a lot of pain, waking up in the night not being able to turn as she was stiff. I was worried sick that something was seriously wrong with our baby so took her back to the doctor who then sent us up to our local hospital. They done further test which was a worries time for all of us as they where implying lots of different diognosi, they all came back clear! Until with visited our hospital again when I refused to to leave until they did a mri as I new something was wrong. We had a phone call that day from the hospital to say lily has a fractured hip. I was devastated but glad we may have got to the bottom of it all. Lily was the referred to a specialist orthopaedic hospital which she had more tests done and medical history of the family. This then lead to then thinking that this was a genetic problem as I too fractured my hips as a child. Lily then after 10 months of being in continuing pain started feeling a bit better. Lily was desperate to be walking without aids so the consultant gave her the go ahead to walk as they hope it was just an accident that her hip fracured.That's night lily went to bed as normal and woke up earlie hours of the morning saying she was in a lot of pain in her other groin just like before. I rang the hospital the next day raising my concerns so she had another mri which confirmed another fracture. Our lives turned upside down not knowing what was wrong with our daughter as how could she just break in her sleep!! Lily then got admitted into hospital to have a bone biopsy of her hip. Weeks went by not knowing what the results where going to be then we got the dreaded call confirming it was osteogenesis imperfecta. Life went like a roller coaster not knowing how life will be ( I just wanted to wrap her in cotton wall) lily then started a treatment for Brittle bones which made her very poorly for the first two times she had it. The consultant then said wer try one more time as this is the effect it has o some children. True to his word lily's body excepted it! We where over the moon and looked forward to seeing lily feeling a better. Lily's last infusion was bought forward due to her pain increasing. We are still awaiting the results of her genitic test to see how we go forward.lily loves to play at the park with her friends but has not yet learnt her boundaries as if she plays to much she will suffer for a few days after in a lot of pain. Lily asked if we could do something for charity to help other people with this disease, she would like to do a walk round our three local parks three times she will be hoping in and out of her wheel chair as it will be too much. I hope you can help and encourage lily as she is such a strong little girl. It will be held on tge 6tg may2017 @10am river side park st neots if you want to join us .Many thanks to all that can donate love from lily 💖💖💖