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Save Jasmine's Leg

$33,647raised of $80,000 goal
42%

Organizer: Kelly Rees-Caldwell Beneficiary: JASMINE AMMARI

Jasmine was born with a rare condition. Jasmine is about to turn 2 on Saturday(30/3/2013) she's about to have her 4th surgery on Sunday (31/3/13), she's had 4 surgeries in less than 7 months.

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Fundraiser Details

Our baby, Jasmine, was diagnosed at 5 days old with a rare condition known as Congenital Pseudarthosis of the Left Tibia and Fibula (CPT). She was diagnosed by a German Professor in the UAE. Since that very young age (for the past 18 months) her left leg has been in either a cast (for approximately the first 8 months), followed by various Braces, all of which designed to prevent the Left Bowed Tibia from breaking. She has always been a very happy baby. She loves people and is always smiling, despite being in the hospital at least once every fortnight since her birth. People always comment on how much of a happy baby she is. She has never let the brace slow her down and has always adapted to new braces. She however has never walked alone. We long to see her take her first steps but she never gives up and use to walk while holding onto furniture or a walker. In July 2012, the professor told us that our baby required surgery ASAP, which he had a +90% success rate, his only failures being 2 cases where the patients had already had breaks through failed treatment elsewhere. We had explained to the Professor that we did not have the money readily at hand to pay for the operation and would have to raise a loan and go into further debt. He told us we should do everything possible to get the funds as Jasmine's leg could break at any time and then things would be harder to fix. We borrowed the money to ensure that our baby girl could have the operation scheduled by the Professor. We truly believed that this would prevent her bone from breaking and we remained hopeful.

Our insurance would never cover Jasmine since her condition is congenital so since birth we have been paying for all doctor, hospital, X-rays, MRIs, blood tests, casts, braces (changed every 3 months) and most recently her surgery bills. We are obviously in a lot of debt already.

The operation appeared to go well, though Jasmine did have to have a blood transfusion. However, three days later our strong Jasmine was determined to sit up and she was released from hospital a week later but she did have to spend a month sitting with her leg upright. She obviously doesn't understand why she has to sit still and why she cannot move around to play with other children. We try our best though to keep her entertained and she's never stopped smiling all through this. We just hope that all of what she has been through doesn't change her amazing character. Her smile is seriously medicine to us all :) Unfortunately, 6 weeks later on the 27th Sep, Jasmine indicated/complained of a sore/painful leg which was confirmed by A and E as broken. Jasmines leg was then put back into a cast. The surgery had therefore failed. During a scheduled paediatric visit the following week (4th October, 2012), the cast was removed, as Jasmine seemed in pain and the fracture had worsened with a bone now protruding through the surgery wound/skin.

Since then, the professor has behaved very unprofessional. He only seemed to care about the financial side of things when we wanted to discuss her prognosis and what we should do to take care of the bone being outside? We were then extremely shocked when he said that he told us that the first surgery was only a trial and had a 50/50 chance as opposed to the +90% success rate. We felt as if all the hope we were given was false - if it was only a 50% chance then why put her through all that and surely then it would have a 50% chance to heal without surgery? Basically he then told us to go, with total disregard to Jasmine’s current status and the bone still protruding in her broken leg.

Thankfully one Dr in Abu Dhabi and another in Dubai have been very helpful and kind to Jasmine and both have been in contact with the Dr in Miami.

She now requires quite an immense surgery to remove part of the infected bone, resect the pseudarthrosis area, apply a growing rod and BMP to help support the bone and a fixator for approx 6 months to lengthen her leg. Sine the bone is outside, she needs the surgery now due to the risks of the infection spreading. Also the longer her leg stays in the current state, the less likely the surgery will work and the more likely she will develop problems with her foot, ankle, knee, muscles etc.

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Updates

Updates

03/25/2013
by Kelly Rees-Caldwell
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. 




01/19/2013
by Kelly Rees-Caldwell
http://youtu.be/OaYTzo_K0Do
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.





11/10/2012
by Kelly Rees-Caldwell

This is Jasmine's page so you can see more of what shes been through and keep up-to-date with everything in the future. This will also allow us to Thank u all for your support and show you how u have helped us.
https://www.facebook.com/?ref=tn_tnmn#!/SaveJasminesLeg






11/10/2012
by Kelly Rees-Caldwell
This is Jasmine's page so you can see more of what shes been through and keep up-to-date with everything in the future. This will also allow us to Thank u all for your support and show you how u have helped us.
https://www.facebook.com/?ref=tn_tnmn#!/SaveJasminesLeg





11/09/2012
by Kelly Rees-Caldwell
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




11/05/2012
by Kelly Rees-Caldwell

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. 
https://www.facebook.com/media/set/?set=a.10151093153502091.434747.510312090&type=1&l=b4eb2941e6






10/25/2012
by Kelly Rees-Caldwell
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! 




10/20/2012
by Kelly Rees-Caldwell
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. 




10/20/2012
by Kelly Rees-Caldwell
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. 





10/20/2012
by Kelly Rees-Caldwell
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.




10/18/2012
by Kelly Rees-Caldwell
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. 




10/17/2012
by Kelly Rees-Caldwell
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 caldwellkr@hotmail.com





10/17/2012
by Kelly Rees-Caldwell
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! 




10/16/2012
by Kelly Rees-Caldwell
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!! 


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