Jasmine will have the fixator removed on Sunday 31st, the day after she turns 2 years old. I still cannot believe that she is about to have her 4th surgery in 7 months and she is only just turning 2. She's the strongest person I know! What's harder for me to grasp is that we know amputation is never off the cards until she reaches skeletal maturity -16 years old and that she will require more surgeries in the future such as 2 rod changes and leg lengthening. Its hard to think about these yet since we still have to pay for the last surgery. please continue to help us raise money to pay for the surgery. Any delay to the next surgeries could interfere with her prognosis and she could face problems with the metal rods inside her leg.
Just received a copy of when Jasmime was on TV before her third surgery in USA. It's in Arabic but non-Arabic speakers will be able to watch Jas and see where we get our strength from. thank you Al Hurra TV / Al Youm for covering Jasmine's ordeal. Please continue to support Jas so that we can pay for her surgery.
I just wanted to first thank you all for supporting us and all of your kind words during this difficult time. Thank you to The National and 7days for publishing Jasmine's story. Please keep sharing her story and help us to increase awareness of her situation. She needs this surgery now. We are so lucky to have such a happy baby when she's going through all this but these days I am witnessing a change, she's getting so frustrated with it all. Sunday we have a check up and every time we go to the hospital I worry that her bone will be outside again :( trying to stay positive and I'm sure with everyone helping we will get there! A few ppl also told me they will get back to me on Sunday with whether they can help us, so praying for good news! Thanks again everyone, we will always be grateful. God bless u all xxx
Yesterday Jas had an xray which shows both bones in her left leg are now broken. Her leg looks so much worse, although the wound is healing, thank God, the leg itself looks very bad.
Here is a link to some photos from yesterday. Whats worse is she now seems to be in pain.She never use to cry when changing the cast coz she was use to it from 5 days old but yesterday she cried her eyes out :( please keep helping us coz the only way to save her leg is to get her this surgery.
Thanks everyone for your continuous support. Jasmine is now out of hospital but she's undergoing some more blood tests due to some being slightly elevated and also they picked up on some type of infection...She's now on strong antibiotics. Maybe this is Gods way of giving us more time to raise the money...but as soon as her blood work gets the all clear, she will need surgery straight away. Please continue to share Jasmines story and help her get this surgery! We are so grateful for all your help so far!
Her condition became more serious when the bone broke and the bone poked out of her skin. The original dr told us we had to do surgery and convinced us with his 90+% success rate and then after her bone broke told us it was only a trial with 50/50 chance. Then refused to treat her without money.
we have been lucky and have found two drs willing to help...one in Dubai and one in Miami. We would prefer to do the first surgery with the Miami dr since he has treated a lot of CPT patients and is focusing on this condition. He has also helped by giving us a discount and even though he is in Miami he's continuing to offer advice and check up on jas from there. He's also willing to follow up from there and is willing to advice drs here for more simpler surgeries here e.g. Removing fixator. Both drs are willing to go pro bono but the cost of the equipment and hospital etc is coming to around 300,000AED. Please keep sharing her story and help us get her the treatment she needs. Thank u for your continuous support.
Also I just wanted to clarify...
Jas doesn't have just a broken leg.
She was born with the condition.
The Drs cannot even give us a firm explanation on her condition coz its so rare and complex.
Part of the bones in her leg are unhealthy and abnormal so they don't heal like us.
She doesn't require just one surgery. She needs one major one, then one to remove the fixator after wearing it for 6 months, then as she grows the rods will need changing.
She will still need to wear a brace for 15+ years which needs to be changed every 3-4 months.
She will need X-rays, MRIs, and follow up appointments.
So her condition is very complex and lengthy.
Its hard enough to deal with without the financial issues. Her treatment is very costly and her insurance will not cover her.
We are not begging to get jasmine a new cast...we need your help and we need to raise the money to get jasmine the treatment she desperately needs. Without this treatment she will lose her leg.
i can send anyone who asks her medical records.
Jas seems well. The dr says we have to wait 48 hours to check. We have to pray for no signs of infection and that her body shows signs of the skin healing. This will then give us 2 weeks to get the money to pay for the major surgery. Jasmine is such a fighter. She's so happy and sitting up already. She's shocked all the nurses and doctors with her happy personality and fighting spirit. She's not even on on pain meds today and she was just singing to Barney! Thanks all for your continuous support. We really appreciate it.
Jasmine was admitted into hospital last night. Her doctor said it can't be left the way it is anymore and since we can't afford the big surgery yet and we are not willing to amputate, then she said she's going to try and break off the piece of bone that is sticking out and try to get it to heal somewhat so that it lowers the risks of infection and hopefully this will buy us more time. Please keep sharing the video and give me all the ideas u have. If u want her medical records then email me and ill send them to u. She's desperate for the big surgery and we don't know how much more we can put off amputation. Please pray the surgery goes well today.
Unfortunately I'm having difficulty uploading Jasmines medical records on here. If anyone would like to see further evidence of her condition, what she has been/going through and what she now needs or thinks they could use these to help us then please let me know via firstname.lastname@example.org
Thanks everyone for your continuous support!
Iv been asked or told by a few that they can't seem to find much info on CPT. This is true, not much on google and most is negative. I remember when I was first told this crazy long name and typed it into google, it was hard to find and everything seemed to point to amputation. However now a Dr in Miami gives me hope. He seems to have created a technique that is showing promising results and he is confident he can heal Jas. You can find out more info from limblengtheningdoc.org and under orthopaedic conditions is congenital pseudarthrosis. It also shows a video of what Jas needs. U can see that even when we do reach the amount req for surgery (I'm being positive) that she will undergo an immense surgery and will have to have a fixator on her leg for about 6 months. She's so strong and I know she can get through this!
Thank u so much everyone so far! I'm so happy that everyone is sharing the link and thank u for contributing and praying. We all really appreciate your help.
Update on Jasmine: Jasmine's bone and wound was cleaned today. Every time we change the cast the bone seems to be poking out more :( she's so brave though! She gets upset when they change it but then she will turn to everyone in the room and say wawa(meaning pain in Arabic) and within a minute she's back to her smiley self. She's such a trooper!
Hopefully soon we will get her the treatment she needs and she will soon be running around inshallah!!