We received a letter from the CEO of Alberta Health Services. We are invited to lodge an application for Naomi. We will do just so. We really need some support to cure our daughter, from the Albertan government.
In the meantime, the medical file was sent a week ago to the American hospital. We are awaiting their call.
Eventually, we will be getting the final pathology results from Toronto, next week.
The patient is now well and resumes school. BIG THANKS
Naomi is back home from a 2-week in-ward stay at the Stollery Children Hospital. She is doing quite well. She might resume school on Monday 20, 2014
Good morning everyone. It has been more than a month since I updated you on this project. Let me start by wishing a happy New Year 2014 to all of you.
For starters, our fundraising event went well on December 14, 2013. We thank everyone who organized and or participated in any capacity. Another fundraiser is planned in April 2014. Big thanks.
1. The physicians met on December 19, 2013 at Stollery Children Hospital to discuss Naomi's case and the pathology results. It appears that the pathologists believe that our daughter may have some issues with her colon and gastrointestinal systems. Given the facts that the patient has never suffered from the colon before starting her treatment at the Stollery Children hospital in Edmonton, we believe that
any colon issue appeared during or was exacerbated by the sickle cell treatment and could have been detected from 2006 to 2013 by the hematologists and GI doctors treating her in Edmonton, AB. The pathology result from Toronto is still temporary though.
2. On December 20, 2013, together with the physicians we went through the different events and milestones during the duration of our daughter's care with the hematologist team. A senior physician drew a timeline on a board. We noticed that everybody made the efforts to try to better understand what went wrong in this case. Contrary to what the family believed, the timeline showed that the bleeding started
before the prescription of the Exjade and Deferal chelators but after the patient started the main sickle cell drug called Hydrea (Hydroxyurea). We advanced in the understanding of the case because it is now clear that the main two drugs (i.e. Exjade, Deferal) prevented the healing but were not the initial determinants of the bleeding. The pathologists have NOT been able to identify clearly the process that led to the colon bleeding though.
The hematologists and the family decided to resume the administration of the major sickle cell drug called Hydrea (Hydroxyurea) at a lower half dose compared to before the colon crisis. The first post-crisis capsule of Hydrea was given to the patient, Naomi, on December 30, 2013. As soon as we gave it to her, she started complaining of headache and stomach-ache. This sickle cell drug sent her into crisis and to the emergency room twice again on January 1 and 5, 2014.
3. The family found the two latest crises and the timing with the resumption of the Hydrea drug puzzling. All the medical team has been more attentive and sensitive to our daughter's case now. There is a real three-way communication between the young patient, her family, and the medical team. After consulting some medical articles from St. Jude Children's Research Hospital and the Mayo clinic in the USA, the family noticed that the patient's case is most likely unusual in term of type of medications and posology.
We discovered that the Hydrea drug is mainly tested for adults although the treating physician has the ability to adapt the dosage to children. Although other kids seemed to tolerate the quantity of 1000 mg given to our daughter Naomi, the latter did have some trouble with it for an unknown reason. Unfortunately, the Hydrea drug maker did not give any clear guidance to the physicians for the paediatric use of their drug. The physician should have been cautious when the colon first bled a couple of years ago. But that opportunity was missed.
4. Unfortunately, our daughter has been at the Stollery Hospital since January 1, 2014 for severe stomach-ache. All is being done by her physicians (hematologists, GI doctors, and surgeons), nurses and hospital teachers to alleviate her pains and suffering. We thank them warmly. Naomi is getting better...
5. The Stollery medical team has been in contact with the American NIH team to coordinate the bone marrow transplant procedure for the patient (BMT). As you know, the US procedure is unique worldwide because it is implemented without any chemotherapy to avoid heavy side effects (secondary cancer, epilepsy, and infertility) for sickle cell patients. It is a recommended procedure for patients with an organ failure. The most important condition of success is that the patient should have a sibling as a perfect bone marrow donor
The patient's file is supposed to be sent in January 2014 to the NIH in Bethesda, Maryland. Afterwards, an appointment will be set up for Naomi to go there with her dad and her donor. We anticipate an appointment in February or March 2014.
6. The beauty of the new NIH sickle cell procedure lies in the fact that the patient returns to her initial state in case of failure without any more complication, contrary to the normal established BMT procedure.
RECEIVED A LETTER FROM THE GOVERNMENT OF ALBERTA
1. Bearing in mind that due process, natural justice, rules of law are important in Alberta, we thank the Alberta Premier, The Honorable Alison Redford, for reviewing our comments and
instructing the Minister of Health, The Honorable Fred Home, to respond to us on behalf of the Government of Alberta. Following that response, we will bring our case to the attention of the appropriate health authorities and follow the instructions from the Minister of Health.
2. We contacted, phoned, and talked to lawyers Offices in Alberta and America, to get simply a better understanding of the patient's rights and responsibilities, the product's maker rights and
obligations as well as those of the Canadian physicians. Globally, it appears that we have a solid case against the physicians only in the province of Alberta. We may not have a solid case against
NOVARTIS Pharmaceuticals because the gastrointestinal bleeding sides effects have been known and even published in the prescribed information for the drug Exjade from 2009. In a nutshell, it is a medical "technical problem" with our physicians wrote Novartis i.e. knowledge gap. Ultimately, all bear down to the cost of any prosecution versus the benefits.
3. The physicians will have a meeting between medical specialists on December 19, 2013, at Stollery Children Hospital, in Edmonton, AB.
4. In the meantime, we focus on our fundraiser effort to fetch the means to cure our daughter and improve her quality of life with a top quality of care from America. We believe so little now in the Alberta quality of care. We believe that the Canadian medical framework transformed some physicians into compulsive medical high-risk takers that have nothing to loose and shielding them away from a serious litigation and effective prosecutions. On the contrary, having lived and worked in America, the US physicians and hospitals are more cautious in their procedures, minimizing the average risk, and settling to avoid high cost litigation instead. The US medical system is better if you have insurance coverage. We hope the Obamacare will succeed to help the non-insured Americans.
5. With a backing of the Supreme Court of Canada, we, Canadians, made our choice for the universal health care system that seems under-performing so much.
In 1995, As a new immigrant, I met another immigrant who lost his daughter to the health system in Ottawa, ON. He told me that the provincial health care systems were failing. I didn't him understand then, I do see now.
6. The healthcare systems, as of today, are dangerous because they transfer the risk completely to the patients instead of sharing it equitably among the physicians, the hospitals, and the patients as in America.
7. The final question is: Do we, Canadians, really value our lives? If yes, how much? My answer is tentatively no. I lost hope in our health systems, we should absolutely make all physicians better accountable and responsible.
8. All in all, our fundraiser event is held tomorrow Saturday December 14, 2012 from 5PM to 2 AM at Cite Francophone, 8627 - 91 Street NW, Edmonton, AB. All are invited. Entrance fee is $10. Food and music at will.
Big thanks. Have a nice weekend
We thank Mrs. Leah Germain and Metro News for reporting on our daughter's case, on December 2, 2013 online and December 3, 2013 in their printed version:
The patient is getting better even though she looks a bit tired in the last 2 days.
We are waiting for the pathology result from the tissue sample sent to a US hospital. But it is taking too long though!
Eventually, we are organizing a fundraiser on Saturday, December 14, 2013 from 5PM to 2AM at Cite Francophone (Rue Gaboury)
The Guinean Association in Edmonton is organizing a fundraising events for the Hope of a Cure project
FUNDRAISING EVENTS ON DEC 14 2013
Naomi was at the emergency room on Friday, November 15, 2013 for an infection. The ER physician was happy that she came as soon as possible to tackle the infection head on.
Besides the donations on the goFundMe site, we also received last week, more cash donations from;
Mrs and Mr. Ferreira (Edmonton): $600
Mrs. Yvette Ilondo (Edmonton) : $100
Mr. Christophe Danumah: $100
Mr. Gildas Gnidehou and family: $100
Please join us to thank them.
Big thanks to all of you, again!
Naomi resumes school today. The school principal assured us that everything would be done to make her stay as comfortable as possible. Because she still needs close monitoring, special request will be made to the Edmonton Public School Board for funding by her school.
On the other hand, we suspended all blood transfusion until things are clarified to avoid further medical trouble such as an iron overloading that might damage, as you know, the heart, liver, and kidney.
Besides, everything is being done to expedite her file to the National Institutes of Health, Bethesda, MD. Our family doctor was contacted by the Stollery Children Hospital to fill out some forms. An appointment was set up for Saturday, November 16, 2013 to get a complete medical exam.
Eventually, we get some reprieves while waiting for the US medical procedure to take over.
The patient's medical file is being prepared and updated to be sent to the hospital in the USA.
We learned that the Stollery Children Hospital-Edmonton AB sent a pathology sample from our daughter's colon to the USA for a cross-examination and for a second opinion. This is one step toward a genuine accountability in this case.
This week, besides the important donations through the goFundMe site, we received the cash donation from:
The Ivorian Community of Edmonton (Cote d'Ivoire through Mr. Giscard): CAD $450 .
Big THANKS. MERCI BEAUCOUP.
Have a nice extended Weekend
Besides those big donations on the goFundMe site, we received the big cash donations from:
Association des Guineens d'Edmonton: $700
Association des Ivoiriens d'Edmonton: $250
Mrs. K. D. : $300
Mrs. Mikal J. A. (Erythrea): $100
Alassane Mbaye: $60
Students from Catholics Social Services (Edmonton): $60
1. We got the new passports from the US Consulate in Calgary yesterday
2. I thank Mr. Jacques Beaupre for taking the time to organize my DIRECT live interview on Radio-Canada and sending his TV interviewer team to our home TO INVESTIGATE.
3. We had an interview with Radio-Canada and CBC in French and English. We thank the interviewer Genevieve N. and her cameraman for taking the time to interview in depth the whole family dad, mom, and the patient. Thanks Genevieve for listening our side of the story and then moving on to listen to the other side's as well, for a balanced view.
Nous remercions tout le monde.
BIG THANKS! HAVE A FANTASTIC WENKEND.
1. We went to the US consulate in Calgary, AB, Canada. We applied to renew the passports. It was under very tight security. We were not surprised to see that the consulate took security very seriously. But the agents were mostly very friendly and fun to be with. The US passports will be ready within two weeks.
2. The patient is doing ok. She ate well and had a good sense of humor.
3. She will be undergoing a set of medical exams such as MRI again, meeting the interim hematologist, and the ostomy nurse.
4. We have yet to get the pathology results from the hospital. It is important for accountability.
5. We wrote to Novartis Pharmaceuticals, which is the company that made the Exjade drug. It confirmed that the drug was really the trigger of Naomi's medical odyssey on October 4th, 2013. The email read partly as:
"For more information about Exjade, we recommend viewing the prescribing information. The prescribing information, also known as the package insert, is a technical document that provides detailed product information that has been approved by the FDA. The prescribing information includes general pharmacology, indications, warnings, dosage, side effects and clinical trial information.
Below is the link to view the prescribing information for Exjade:
Consequently, Novartis confirmed clearly that its drug was the cause of the gastrointestinal hemorrhage of our daughter.
Dear Friends and Supporters:
Good morning. We continue our relentless effort during this week.
1. We received an acknowledgement of our letter to the Government of Alberta but no decision yet.
2. We are shopping for the best health insurance coverage for expatriate in the USA for the patient Naomi, her donor, and one adult supervisor.
Most insurance does not cover transplants though. I stumbled on this frightening story with the Cigna insurance company:
3. We cruised the web to find some low cost accommodations in or near Bathesda, MD (Suburb of Washington, DC) such as:
- The Children's Inn at National Institute of Health ($0 per night)
- Edmond J Safra House at NIH ($0 per night)
- Navy Lodge
- The Hamilton Crowne Plaza Hotel
- Hosteling International
- Ronald McDonald House - Nova House ($10 per night)
The link is:
4. Eventually, this affordable accommodation finding will help us bring the bill at a reasonable and acceptable level.
5. We will get in touch with the social worker at the NIH hospital to explore more funding possibilities
6. We got in touch with many US fundraising organizations such as:
to help us leverage our effort.
7. We searched and found that a free discount card such as that of NeedyMeds.org could dramatically lower the drugs bill as well:
8. Have a nice weekend. BIG THANKS! to all of you and your family!
LATEST NEWS to all supporters:
THE ESTIMATED COST OF THE PROCEDURE WILL BE AROUND USD $500K I.E. HALF A MILLION USD DOLLARS, COVERING THE 3-YEAR STAY IN MARYLAND FOR THE PATIENT, HER PERFECT DONOR SIBLING ALONG WITH ONE ADULT SUPERVISOR, AT THE NATIONAL INSTITUTE OF HEALTH (NIH), BETHESDA, MARYLAND.
IN ITS LETTER TO US, THE NIH PLEDGED TO WAIVE THE FEES FOR THEIR NEW EXPERIMENTAL "BONE MARROW TRANSPLANT (BMT) WITHOUT CHEMOTHERAPY WITH A RELATED STEM CELL DONOR". THE NEW NIH BMT TREATMENT IS IDEAL FOR PATIENTS WITH AN ORGAN FAILURE SUCH AS OUR DAUGHTER. THE NIH HAS TREATED ABOUT 25 SICKLE CELL DISEASE PATIENTS WITH A SUCCESS RATE OF 85%.
THE BMT PROCEDURE COSTS ABOVE USD $300K. THEN WE HAVE THE COST INCURRED FOR THE ILEOSTOMY REVERSAL ( USD $30k - $50K), THE MEDICATIONS, THE FOOD, THE REHABILITATION, THE SECONDARY EFFECTS TREATMENT, THE SUPPLIES, THE ACCOMMODATION, FOR 3 PEOPLE FOR 3-YEARS. ALL OTHER HOSPITALS DO THE BMT WITH HEAVY CHEMOTHERAPY THAT CAUSES SECONDARY CANCER AND PATIENT'S STERILITY.
IF THE PATIENT MEETS THE HEALTH CRITERIA TO BE PART OF A CLINICAL TRIAL, THEN THE NIH WAIVES THE UDS $300K FEES. WE ARE LEFT ON THE HOOK WITH A BILL AROUND $200K TO BE PAID BY THE FAMILY.
On Monday, October 28, 2013, we will be seeking US consular assistance in Calgary, AB about our daughter's case, in order for her to get proper care in America.
In Edmonton, AB, I thank warmly the Emergency Medical Services (EMS), the surgeon at Stollery Hospital, and all the other medical professionals who performed flawlessly a miracle on that night of October 4th, 2013.
From all accounts, there was a perfect coordination between the EMS and the ER at the hospital. It was the reason why the patient survived.
1. It has been a busy day for Naomi and her dad. We went for an MRI, a T2* test, an electrocardiogram. submit the letter to the interim hematologist to have her files prepared and mailed to the NIH, Bethesda, MD.
2. We sent a letter to the Alberta Premier The Honorable Alison Redford to win the support of the Government of Alberta. We will inform you about the outcome.
3. Besides the donor names listed on this GoFundMe site, we also receive the direct cash or transfers from the following supporters recently:
Mrs W. Z., New York, NY: $100
Professor Andy and Mrs. Sunday Igonor.: $200
Malik Dia: $100
Mrs. Oumy Ndir and Mr. Andy: $200
Yacine Ndiaye: $50
Papa Mamousse Gueye: $200
Mrs Sedami Carine Gnidehou: $100
Omer and Lori Sagbo $100
Ludovic Capo-Chichi: $100
A Friend of Ousmane Gueye: $100
NB: Those who used the goFundMe site have their names and preferences automatically listed by the server. Sorry if I forgot any name! I will correct it momentarily.
BIG THANKS !
So far our crowdfunding campaign is in full gear around the World. It is a new way to form a collaborative community that comes together to undertake a shared project.
Although we have not reach our final goal yet, we have no reason to despair. The real support is (2.52% i.e. USD $1510 on goFundMe site compared with 2.16 % out of site or USD $1300 in direct cash or online banking) i.e. 4.68% so far globally of the target or USD $2810 so far. So we need to continue our effort consistently.
Your support has been instrumental in launching this crowdfunding campaign. As the campaign manager, I thank you all for your support. My next objective is to explore new audience worldwide.
2. We have received an official letter from the NIH, Bethesda, MD. They invite us to provide the current medical files of our daughter for the last 2 years, to assess her current physical and medical state.
Naomi has been accepted at the National Institute of Health (NIH), Bethesda, MD, USA. We received the email from the Senior investigator i.e. Seniormedical doctor (MD).
I would like to thank warmly everyone for the tremendous support gathered by this case of medical malpractice in Alberta, Canada. We are preparing her appointment details and renewing her US passport.
The NIH is the primary agency of the United States government responsible for biomedical and health-related research.
your gift are so useful even more!
Naomi ira au National Institute of Health (NIH), Bethesda, MD, USA. C'est le plus grand centre de recherche biomedicale et en sante Le medecin-chef nous a ecrit son email d' acceptation pour la recevoir la-bas. Nous nous occupons de finaliser le rendez-vous pour ce cas patent d'erreur medicale en Alberta, Canada. Le passport americain de Naomi est en cours de renouvellement.
Merci pour vos dons! On en a besoin!
Ousmane Gueye: $100
Babacar Kide $150
Seynabou Ly: $100
Yacine Ndiaye: $50
FUAMBA ALAIN TSHILOMBO $100
Thank you all for your support to Naomi. We appreciate your kind gestures, hospital visits, and cash. You are our heros. You are making it happen bit by bit, hours by hours!
Today, we get big financial helps from all the following supporters: Maguette and Romeo ($200 cash), Jean-Louis Zokpe ($100 by Internet banking Interac), Katia Sylva ($25), Hawa and Saidou Tine ($150), Hadda Camara Faye ($100).
We are very appreciative for any donation amount. The kid seems to be improving slowly. We made appointment with the US consulate in Calgary, AB to have her US passport ready in case she needS it.
Tomorrow, we will have a meeting with the medical staff at Stollery Children Hospital, Edmonton, AB and will be asking them some tough questions!
Naomi at her bed today.
We thanks Aliou Faye, who contributed $200 by direct email transfer to this project. Thanks you very much.
Nous remercions Aliou Faye qui a contribue CAD $200 par couriel Interac . Merci . Cela nous va droit au coeur.
Good spirit. Although still very weak, Naomi is doing her best.
Naomi as viewed by her peers at the grade 6 farewell ceremony in 2012 at Saint-Jerome Catholic School, Edmonton, AB, Canada
What Naomi is!
Yesterday was a lively day for the little patient. She ate well, told stories to us and the nurses. We all laugh. We thanks Mrs Fatu and Mr. Albert for their gifts and supports. We thanks all of our friends who visited Naomi at the hospital. We appreciated deeply their nice word, get-well-soon wishes, direct support in service and the cash money given.
I contacted a doctor in America. We have a couple of weeks to setup the treatment protocol for Nomi in America. I have not gotten any reply yet from our chosen specialist though. Naomi and I sent an email to him.
Remember in time of test, family and friends are the best. We will be there for you when you need us one day. Amen!
Naomi said on her recovery bed "I was a goner" but I haven't gone yet. What a witty girl! She was as close as 30 minutes of her final departure a couple days ago!
Naomi did not eat much today. We brought some donuts she craves.
Naomi in 2014 at the Stollery Hospital
Naomi in 2014 at the Stollery Hospital
Naomi in 2014 at the Stollery Hospital
Naomi in 2014 at the Stollery Hospital
Naomi in 2014 at the Stollery Hospital
Naomi in 2014 at the Stollery Hospital
PLEASE, MAKE HER DREAM COMES TRUE FOR A LITTLE SPECIAL ANGEL: DONATE NOW!
Latest News: http://metronews.ca/uncategorized/872395/edmonton-family-hope-to-raise-money-for-daughter-with-sickle-cell/
Hi, we are Jose Fiogbe (a.k.a. John Fiogbe) and Catherine H. Camara. We are Naomi's parents. Naomi is both a Canadian and a US citizens. We believe that in time of test, all i.e. the public, individual, private businesses, public companies, NGOs, and corporate donors, synagogs, mosques, temples, pagodas, churches, non-believers, friends, the Governments, and family are welcomed, needed, and appreciated. Any gift of any amount is truly valuable. We call upon your solidarity and compassion to help. It is our crusade and biggest project in life to stop her suffering.
She took the drugs prescribed by her hematologist Dr Nancy Dower at the Stollery Children Hospital, in Edmonton, AB, Canada. But she fell sicker from it. She underwent major surgery such as total colectomy and ileostomy at 11 years old. Her Facebook page is: https://www.facebook.com/NaomiFiogbe
CBC News and Radio Canada Reports are here:
In English / En Anglais:
In the other Media:
We already sought care for Naomi in Canada, Africa, and Australia. We endeavor to bring her back to America, her native land for our final medical push. We are happily exhausted but not down yet. We are raising fund for Naomi on one hand and for a campaign to raise awareness about the suffering of people with sickle cell disease on the other hand. Until now, the Stollery Children hospital - Edmonton, AB, Canada hematologists pretend not to know the triggers of the LATEST Naomi's quasi-lethal crisis, on October 4th 2013. We believe that it is surely the chelator drug called EXJADE (Deferasirox} ( http://www.us.exjade.com/index.jsp
) prescribed by her hematologist Dr. Nancy Dower and taken daily for 5 years that caused her to bleed for 5 years to quasi-death. In the USA, 12 patients - out of 23408 hurt by this Exjade chelator drug - had had a colon injury as a very rare side effect like our daughter ( www.medsfacts.com
: US physicians reports to FDA): http://medsfacts.com/study-EXJADE-causing-COLON%20INJURY.php http://www.ehealthme.com/symptom/colon+injury
Massive internal bleeding, major surgery, pediatric intensive care, morphine, hospital ward, 3-week transfusions, monthly medical controls, daily expensive drugs. She went through it all! That is why we are seeking radical, dramatic, alternative solutions. Naomi is a survivor and her family anchor. Loved by everyone everywhere: family, friends, teachers, nurses, kids, school kids. She has an incredible good spirit all the time for a little 11-year-old girl. Resilience.
Naomi, a grade 7 Junior High student,
is a very cheerful little girl. According to her past grade-6 classmates, Naomi
is fun, smart, always there to talk to, has a good personality, friendly,
awesome, hilarious, kind, and smart. She loves the World. She
likes science, mathematics, soccer, and basketball. She is compassionate because
she likes to help her friends feel better. Her hobbies are drawing, movies, and music.
is a social person. Naomi is confident since she can help and gives confidence to others. She is empathetic
because she tries to understand what others are feeling and experiencing,
physically and emotionally, and communicates that understanding to them. Naomi is
humane because she is caring, compassionate, and kind. She likes to deal personally
with people, shows interest in them, interacts with them and remembers them as an individual. Furthermore,
she is forthright, respectful and thorough being conscientious and persistent.
She dreams to become a physician or a nurse. She said:
"I have to give back to society the love and care I am getting from the
medical community and my family".
Unfortunately, Naomi is simply sick
and very ill. To avoid her early demise, I created this page to raise funds to
help pay for her treatments in the USA and raise awareness of her diagnosis and
her need for an urgent bone marrow stem cell transplant. One of her sister is a perfect
match as a bone marrow donor. Naomi was born with
a blood disorder. She was pre-screened at birth and the hospital found that
she had the gravest form of sickle cell anemia, which is a genetic blood disease.
Naomi lived happily for two and a half years. Naomi was sent on vacation away. She
started having the first crisis and she became extremely sick ever since. As a
result, she was brought back to North America and thanks to her stamina and God,
Because of the sickle cell
disease (SCD), Naomi has to have a blood transfusion every 3 weeks. As you
know, when someone has very frequent blood transfusions, an excess of blood iron
is stored in and can damage her vital organs i.e. heart, kidney, liver :etc. To
avoid these latest irreversible effects, the patient must be put under very
expensive drugs called iron chelators to control the body iron level and alleviate her extreme suffering and
pain but not to cure her.
Nonetheless, she developed severe gastro-intestinal
(GI) bleeding, in the early stages of the medication. Her doctors tried to
mitigate the bleeding with a drug IN VAIN. It got worse, and worse. It got so worse that on October
4, 2013, after returning from her school, Naomi went to the washroom and a
MASSIVE bleeding followed. She started vomiting through the mouth and nose
while bleeding profusely from the bum. She was in her own pool of blood
when one of her siblings discovered her and raised the alarm quickly. Her older
sister called 911 at the request of their mother and medical help came in
minutes. Under intensive CPRs and IV injections, Naomi was transported to the
Children hospital emergency room. There
her case was deemed one of the most critical ever seen at any emergency room. She
was transfused with 7 bags of blood but all the blood was again lost through
her underwear. The prognosis was that she could not survive.
Most of the specialists was called back to assist at the Emergency room of the Stollery Children Hospital - Edmonton, from around town because nobody could really comprehend the causes of such
a MASSIVE internal bleeding an 11-year old can sustain without any crash or
accident. A task force of not less than 20 different medical specialists
decided to take a chance and do surgery.
Now her, our (you and me) biggest UNIQUE DREAM is to get a stem cell bone marrow transplant and cure from her situation. An expensive procedure. We dream of a successful stem cell transplant to cure her sickle cell disease without chemotherapy in preparation for the transplant. "
The transplant technique is relatively uncommon and is a much more
tolerable treatment for patients with aggressive sickle cell disease who
often have underlying organ disease and other complications, says Dr.
Damiano Rondelli, professor of medicine at University of Illinois in Chicago, who performed (the novel procedure on a lady called Leshea Thomas)
The procedure initially allows a patient's own bone marrow to coexist
with that of the donor. Since the patient's bone marrow is not
completely destroyed by chemotherapy or radiation prior to transplant,
part of the immune defense survives, lessening the risk of infection.
The goal is for the transplanted stem cells to gradually take over the
bone marrow's role to produce red blood cells -- normal, healthy ones" ( www.sciencedaily.com
PLEASE, DONATE NOW!
and Catherine H. Camara
Nous avons pris contact avec les specialistes en drepanocytose aigue que sont les professeurs Damiano Rondelli and Lewis Hsu, de Chicago, qui nous donnent gratuitement de precieux conseils pour une evacuation sanitaire aux Etats-Unis, notamment au National Institute of Health (NIH), Bethesda, MD, USA. Nous avons eu les contacts requis.
We contacted and obtained free but precious help from great SCD professors Damiano Rondelli and Lewis Hsu, in Chicago about how to get help at the NIH, Bethesda, MD, USA