The Thalassemia Sisters
Zwan Family Charity has been approached by a lovely family that has two sisters, Deba & Nageena, they have a disease called Thalassemia which is basically a genetic Leukemia. The bone marrow does not produce blood properly and the poor blood production causes an iron toxicity which can damage the liver and the heart.
The cure for Thalessemia is a bone marrow transplant. We were lucky enough to get in touch with Cure2Children who sent the supplies needed for collecting DNA in order to find a bone marrow match. The swabs have been taken from family members and has been sent to a laboratory in Germany to test for a match. Thanks to Cure2Children, Zwan Family Charity has saved thousands of dollars.
We have also found a hospital in India that does bone marrow transplants and has enough beds to accommodate 2 people at one time. However, it is a private hospital and there IS a charge. Even with a discount, we are looking at having to raise 60,000USD to cover both girls.
Deba is 17 and her body has been quite damaged over the years from the high iron content. Negeena is the younger sister. She is 11 which makes her a much healthier person at this time. It is Deba’s condition that adds to the cost. We need to raise 60,000USD to cover the cost of documents and airfare for both girls, their father, both donors and a Zwan Family Charity escort. It will cover both bone marrow transplants. Both transplant recipients require 6 weeks in the hospital. Each donor requires 2 days in the hospital. Then, the girls and their father will have to stay in India for 4 months for follow ups and follow up treatment.
We have set up a GoFundMe page for a friend of Zwan Family Charity who will be running a 24 hour marathon to raise funds for the sisters; please visit https://www.gofundme.com/sx6kh7fk if you wish to make a donation.
***UPDATE*** Our 24 Hour Run/Walk Marathon kicked off in Kabul at 12.00. We are grateful to all who have registered to run, those who have spectated and the local businesses who have come along to support us. It’s been a fantastic day so far!
***UPDATE*** The marathon ended at midday today, we had four runners who ran 100kms or more to raise funds for Deba and Nageena. The whole event was a huge success and enjoyed by everyone, including the weary runners who kept going for the whole 24 hours!!! Thank you to everyone; supporters from around the world, spectators, local businesses and of course, the runners! We would also like to extend our gratitude to BBC Persian and TOLO News for covering the event and raising awareness of the sisters illness.
Top runners were:
1. FD (age 52) Top male runner who ran 130 laps or 113.750Kms (70.65 miles!), 28,600 steps (13kms altitude climb up/down)
2. DL (age 55) who ran 119 laps or 104.125kms (64.70 miles!), 26,180 steps (11.9kms altitude climb up/down)
3. SM who ran with a 12 kg (26.45lbs!) pack throughout the entire course accomplishing 114 laps or 100kms (62.14 miles!), 25,080 steps (11.4 kms altitude climb up/down)
We raised a total of $9,671 towards the campaign and donations are still coming in.
***UPDATE*** We saw the girls and their family recently. We were able to tell them all about the fact that there are matches within the family.
We discussed that we are trying to get them into a trial in the US but will continue to raise funds in the case that they have to go to Pakistan or India.
We drew more blood and sent them for echocardiograms and ultrasounds.
We are nervous about Deba’s results as this will tell us more about being able to be accepted for the transplant.
We need a proper ferritin level so we will be physically driving it to Pakistan. (We can do it in Kabul but the result can take 14 days and we don’t want to wait that long).
Once we have these answers, we can go to Islamabad and purchase the iron-reducing medications.
***UPDATE*** The iron levels are back on the girls. The levels are high but workable.
It looks like both girls will be eligible for transplant once we bring the levels down!
We are talking to Dr. Lawrence Faulkner from Cure2Children who is helping to connect us to a hospital in Pakistan where we can buy the needed chelation medications.
Thank you to each and every one of you who has donated so that we could do the diagnostics and buy the necessary medications!
Deba is now being prepped for her bone marrow transplant. We are attempting to manage the preparation in Afghanistan but it is proving to be very difficult for MANY reasons.
We are working to get her to Bangalore as soon as possible and allow Dr. Faulkner and his team of specialists to prepare her.
This will entail her to be in Bangalore for 3 months pre-op and 6 months post op. (Those following the case can see that the plan has changed over time but it has now gone from nebulous to concrete).
We will send Deba, her mother and her baby sister. This will allow Mom to care for the baby but, in this case, the baby is also the bone marrow donor so the team can also watch her and make sure she is big enough and fit enough to donate when the time comes.
We have about $5000 left from the original amount raised. We have been able to do the testing needed and buy the medication needed for both girls.
However, at this time we need about 10,000usd to get Deba to Bangalore (includes tickets, passports and documentation), put the required deposit on living accomodation
and have enough funding for food, doctor’s visits and medication for the 9 months in country.
Please consider donating 1000usd to cover a month of expenses or….please email us through Gofundme if you know of a small to medium company that would be interested in sponsoring a month in Bangalore.
We are so close to success for this young lady and we will not be giving up now.
Please spread the word and let’s see how we do!
Parks Global Solutions (www.parksglobalsolutions.com) have donated 3,000USD which will pay for all travel costs for the girls and their family to travel to Bangalore, India, to commence their bone marrow transplants. We are extremely grateful for this very generous donation!!!
We are starting the visa process to move Deba and Negeena and the family to Bangalore.
The girls will get to Bangalore and begin the “down staging” which is the process of preparing their bodies for the transplant.
This will take 3-6 months.
We have not raised the funds for the transplant. Please keep sharing their story and keep donating when it is possible!!!
WE WILL NOT STOP UNTIL ALL THE FUNDS ARE RAISED!
If you would like to make a pledge towards our campaign for Deba and Nageena, please visit our GoFundMe page:
Deba, Nageena and their family have been granted 6 month visa’s for India!!! They will begin their journey in a few days time and commence their treatment for Thalassemia. Check back to this page for updates on their progress!
Please continue to donate, we are still short of the funds needed to pay for all their treatment and living costs while in India. Visit their GoFundMe page if you wish to make a donation or visit our Donate page where you can donate using all major debit/credit cards and Paypal.
Deba, Nageena and their family have finally arrived in Bangalore, India, after a very long journey from Kabul! They will be moving into their new temporary home in the next day or so and will begin their treatment soon after. We are still seeking funding to reach our target of $60,000 which will pay for their bone marrow transplants, all medication that will be required and their living costs for the duration of their stay in India. We brought forward moving them to India as the girls were in urgent need of the expert care of Dr Faulkner from Cure2Children (www.cure2children.org)
Please continue to share the story of our Thalassemia Sisters and donate towards their treatment. You can visit their GoFundMe page https://www.gofundme.com/sx6kh7fk or via our Donate page http://www.zwanfamilycharity.org/donate-here/ – all major credit/debit cards and PayPal are accepted. Please mark that you wish for your donation to go to the Thalassemia Sisters.
***UPDATE*** June 2016
Representatives from Zwan Family Charity recently visited the girls and their family in Bangalore. The girls are being prepared for their bone marrow transplants under the care of Dr Lawrence Faulkner and his team.
Nageena is ready for her bone marrow transplant and we are urgently seeking funding to pay for the procedure, medication and all nursing care. The cost of the procedure is USD13,000; if you would like to make a donation, please visit their GoFundMe page or contact us for PayPal information. Visit their page here: https://www.gofundme.com/sx6kh7fk
***UPDATE*** August 2016
Deba and Negeena are still in Bangalore, India and preparing for their transplants. Negeena is supposed to undergo her procedure in September but it may be a little longer if the doctors decide to wait. They are the experts.
However, Deba (the older girl) has gained 6kg (13.2lbs) since arriving in India. Negeena (the younger one) now looks like a “normal” girl.
Please keep praying that we raise the rest of the needed funds, that the family finds peace during this difficult time and these 2 beautiful girls undergo their transplants and go on to live long, healthy lives.
Please click on the following link to make your donations via GoFundMe – Donate here!
***UPDATE*** September 2016
We are EXTREMELY happy to announce that Negeena (the younger sister) has been given the green light for her bone marrow transplant. She is next on the list and we hope to have her into a bed in the next 3 weeks.
The hospital only has 4 bone marrow transplant beds and there are children in them at the moment but Negeena is next!
We cannot believe we have come this far. It was about a year ago that Zwan Family Charity and the Thalassemia sisters began their journey together. It has been hard but it the pay off is finally here. Their father is no longer getting paid from his job but his position remains open for him. However, things are tough financially.
Deba (the older sister) requires injections every single day so the trip is made and transport must be paid.
Overall…please keep sharing this story with friends, family, churches, Mosques, any organization that may be interested in funding a portion of this project.
Thank you for all the support to date…this is truly unbelievable! You can find the girls GoFundMe page by clicking HERE
***UPDATE – OCTOBER 2016****
Nageena’s bone marrow transplant has not yet been carried out. She has had her hair shaved off and a central line has been put in place in preparation for the procedure. The doctors removed her own bone marrow to keep frozen to be used in the case that her body rejects the donor marrow. She is going to the hospital twice daily for injections.
Only a few more days until admission!!
***UPDATE – NOVEMBER 2016***
Nageena has been admitted into her bed in the Bone Marrow Transplant Ward for about 4 days. She continues to receive her pre-procedure injections. She is tolerating them well. Her little 4 year old hero brother, Masivir, will be admitted in about 5 days time. He will also be prepped for about 2 days so he can give the marrow. Things are going well! The girls are on the right road….but the road is long.
Please continue to pray for Nageena and her brother while they prepare for the long awaited, life saving bone marrow transplant. Also please consider making a donation so that we can continue paying for the medicines and to provide financial support to the family.
***UPDATE 2 – NOVEMBER 2016***
We have been informed that Nageena will receive her bone marrow transplant on the 9th November! Please continue to pray for her! Below are a couple of photos, the first one is of Deba and Nageena with Dr Laurence Faulkner of Cure2Children and Rajat of Sankalp Foundation; these 2 organizations have worked tirelessly to ensure the girls receive the care they need.
***UPDATE 3 – November 2016***
The bone marrow transplant was completed yesterday (9th November). Little Masivir did well and will be discharged tomorrow (11th November) He has no complaints and is our little hero!
Nageena is on the isolation ward, she has received the bone marrow and is, basically, as vulnerable as a person can be as the medications have wiped out her immune system in an effort to help her to keep from rejecting the bone marrow.
We have been working on this case since August 2015, we are overwhelmed that this transplant has finally taken place! The next two weeks are critical, please continue to pray for Nageena and her speedy recovery back to full health.
***UPDATE 4 – November 2016***
Nageena is on day +9 with very low counts; she had some fever which seems to have responded to standard broad spectrum empirical antibiotic therapy. She has also suffered from mouth sores but she has responded to treatment. She also has some Petechiae due to low platelets which are being transfused. These are all expected side effects of the bone marrow transplant and her counts are expected to start rising in the coming days. She is still at a very vulnerable and delicate stage of her recovery but so far so good!
Zwan Family Charity will be visiting Nageena in the next few days, please visit this page for another update!
***UPDATE 5 – November 2016*** Zwan Family Charity has made a visit to Deba & Nageena to assess their progress and pay some of the bills. Sweet Nageena was smiling even though she is still in the critical stage. She is extremely pale and all her opportunistic virus are rearing their ugly heads. She has lost her little bit of hair she had left after shaving. She has petichiae (little broken blood vessels) in her eyes. She had a blood transfusion yesterday. However, the Doctors say that everything is still showing good signs!
Deba is with her the ENTIRE time…bless her! Please pray that Nageena does not reject this transplant! We still have about 10 days of the critical phase left!
If you wish to make a donation to the girls fund, please visit our GoFundMe page set up specifically for them. Click HERE – a new page will open.
***UPDATE – December 2016***
Nageena is home from the hospital. She will be recovering with her family now. She returns to the hospital in 10 days for blood work that will help to tell us if she is accepting or rejecting her brothers marrow. Please pray for her!!
Also, we need 1,000USD per month until the family returns to Kabul and 15,000USD for Deba’s (the older sister) bone marrow transplant. This is an awesome project which to donate this holiday season!
***UPDATE – February 2017***
The girls continue their care in Bangalore and are doing great! Nageena has a hemoglobin level of 13; this means her blood has the proper number of iron carrying components. She is making an amazing recovery from the bone marrow transplant!! We are waiting for the doctors to give us an update on Deba, keep visiting this page for further updates and photos!
We are still seeking funds which pays for the girls every day living expenses and their medical bills – this amounts to $1,000 per month. Deba will need funding for her bone marrow transplant – this costs $15,000. If you would like to make a donation, please visit our GoFundMe page – Thalassemia Sisters Campaign or you can visit our Donate page where you will be directed to our PayPal account details. All major debit & credit cards are accepted. We also accept wire transfers to our US bank account as well as checks and cash.
Thank you from us all for supporting Deba & Nageena!
***UPDATE 2 – February 2017*** The news is in….Nageena is CURED of Thalassemia Major!!!
The bone marrow transplant from her little brother, Masvir, has not been rejected. There is a 2 year time in which we will have to watch her but Cure2Children says “To all intents and purposes, Nageena is cured!”
Thank you to each and every one of you who has donated and supported this case. Please continue to donate, share and spread the word as Deba, Nageena’s older sister, is scheduled for her transplant in the second week of April 2017. We need USD 15,000 for her transplant.
***UPDATE – April 2017***
We have officially launched our Grand Annual Raffle Draw 2017, this year, Deba will be the recipient of all raffle tickets sold. Tickets cost just $20 each or you can purchase 6 tickets for $100…or you can purchase any number of tickets! Please support this worthy cause and help give Deba the future she desperately craves. Lets cure Deba!!
***UPDATE – June 2017***
We write this update with a heavy heart.
The decision has been made that Deba is much too complicated to be able to undergo a bone marrow transplant.
We are working to make a plan as to how to continue care for Negeena while working to give Deba the most comfortable life possible as she returns to Afghanistan.
Our hearts are bursting with happiness for Negeena while it breaks for Deba.
This is the most difficult event in which we have ever been involved.
Thank you so much for all the support to date.
We will continue to update you on our next plan.