NAOMI FIOGBE FUND - HELP A NEIGHBOR!

$4,930 of $60k goal

Raised by 73 people in 38 months
Jose Fiogbe  Edmonton, AB

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:



http://www.radio-canada.ca/widgets/mediaconsole/medianet/6878049

In English / En Anglais:

http://www.cbc.ca/player/News/Canada/Edmonton/ID/2416366241/

In the other Media:

http://www.radio-canada.ca/regions/alberta/2013/11/04/007-naomi-drepanocytose-anemie-falciforme-alberta-etats-unis-fiogbe.shtml



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.

Naomi 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, she recovered.

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) transplant.
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):


http://www.sciencedaily.com/releases/2012/06/120618194714.htm

PLEASE, DONATE NOW!


Jose Fiogbe,

and Catherine H. Camara
(1) 780-250-3277
------------------------------------------------------------
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
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Update 29
Posted by Jose Fiogbe
34 months ago
Naomi seemed a little under the weather yesterday. She checked in the emergency room again. She looks a bit tired these days!

We got the final pathology results: No clear factor could be identified to explain Naomi's massive bleeding 4 months ago. We were told that it was a complex case that might have a multi-factorial determinants. So basically it is inconclusive. Really?
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Update 28
Posted by Jose Fiogbe
34 months ago
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
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Update 27
Posted by Jose Fiogbe
34 months ago
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
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Update 26
Posted by Jose Fiogbe
35 months ago
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.
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 281 total shares
Jose Fiogbe
37 months ago

Thanks everyone for your precious time spent on reading this blog. Please spread and share our link without restriction.

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$4,930 of $60k goal

Raised by 73 people in 38 months
Created October 14, 2013
$100
Anonymous
35 months ago
$50
Anonymous
35 months ago
$100
Anonymous
35 months ago
$100
Anonymous
36 months ago
GR
$50
Gregory Raitsin
36 months ago
YP
$150
Yamini Patel
36 months ago

Naomi Our Prayres are with you. Be strong all will be well. Yamini & Anil

IS
$225
Iwona do Santos
36 months ago

Jose, you are doing great job. Naomi, we wish this Christmas to be magical for you and bring back a smile to your face. Iwona, Michael and Matthew

$10
Anonymous
36 months ago
EL
$50
Ed & Colette Langevin
36 months ago

Stay strong Naomi. We will keep you in our prayers.

$20
Anonymous
36 months ago
Jose Fiogbe
37 months ago

Thanks everyone for your precious time spent on reading this blog. Please spread and share our link without restriction.

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