THANK YOU AGA KHAN

THANK YOU AGA KHAN HOSPITAL!

In November we made a surprise visit to the staff who took such great care of Celestine during and after her operation to remove the massive tumour. We had a VIP tour of the hospital (very impressive!) too! Unfortunately Celestine and Habah (our Emerg-Care Prog. Manager) couldn't be with us, but I was there with my Assistant Director Mr. Maurice Mwanza and Santos, a new face in the management of Tumaini!

23 OCTOBER 2008

CELESTINE IS A NEW WOMAN!

(the following storied copied from a newspaper article I just wrote)

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It is hard to believe, but it’s real. As I write this update on Celestine I’m sitting in a youth hostel in Kampala, Uganda. I left Kenya yesterday for a short break after ten very long days of community work in the rural areas. Those long days were fulfilling in ways that I can not describe, but a break was much needed.

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When I arrived in Nairobi on the 9th of October all I could think about was seeing Celestine. She’d just returned to her home village after a week and a half of recovery in hospital and I could not wait to make the ten hour bus trip to find her in the rural area. There were a few changes since I wrote the original article stating that she would be operated on by a medical team on-board Mercy Ships Africa, docked in Monrovia, Liberia. I sent Celestine to Nairobi’s Aga Khan University Hospital in Nairobi with my Emergency Care Programs Manager on the 24th of September to undergo a mandatory biopsy at the request of Mercy Ships. However, once she got there the medical team realized that a biopsy would not be possible due to the type of tumor she had. A maxillofacial surgery professor from Nairobi University was called in to oversee the case as it needed professional attention.

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After examining Celestine, I spoke to Dr. Mark Chindia over the phone from my job in Saudi Arabia and he explained to me that he could do the operation himself; that it would not be necessary for her to travel to Liberia after all. I was hesitant as I explained that she really needed to travel due to the fact that Mercy Ships was offering the surgical procedure free of charge, so he gave me the contact for the Chief Medical Advisor of Aga Khan Hospital. After reviewing Celestine’s case, Aga Khan University Hospital agreed to cover the expenses under the Kenyan Government’s Welfare Assistance Program. The surgery was scheduled for the following day. I immediately contacted Dr. Chindia after the surgery and he explained that it had gone very well and even better – that the tumor had been benign. After eight long years of living alone with this physical disfigurement that had caused Celestine so much pain, she was free of it. I can’t imagine how she felt the moment that she saw herself in the mirror for the first time. Not only had the surgery been successful, but my project manager told me she was eating solid food only an hour after it had been completed. In fact she could have gone home the following day but she was kept while prosthetic teeth were fabricated as her front teeth had been removed with the tumor. Dr. Chindia explained that new teeth would help Celestine to heal quickly and give her the self confidence that she deserved. I am sure that she now has the best teeth in Kenya.

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On the 15th of October, I finally arrived in the village at Celestine’s home but could not show up empty handed. I arranged with my project manager to pick up two crates of sodas and some snacks so that we could celebrate properly. After all, this was an occasion to celebrate! I was greeted by about 40 men and women who expressed their sincere gratitude and amazement at what we had accomplished. After sharing some words with them, I told Celestine that I had yet another surprise for her. I explained that through some wonderful people in Canada who donated to her cause, we were going to be building her a house as well. Celestine’s reaction was that of extreme joy and bliss – she must have been the happiest person in the world that day. Construction started the following day after I ran around finding supplies and laborers. Donations that I received from all of you through the original story allowed me to build her a sizeable home of 20 iron sheets which included two bedrooms and a sitting room, furnished with 3 beds, blankets, cook-ware, four chairs and coffee table, a chicken house and ten chickens. She is now living comfortably with her elderly father and two young sons and with time she will have forgotten entirely about the life that she used to live. As the home was constructed the typical rural way with iron sheets for a roof and walls of packed mud, it will take about one week to dry after applying the first layer. That is what you see now, but eventually it will all be completed and smoothed over.

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(House before) (House after)

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I am still in awe of this entire story. The area assistant chief explained to me that throughout the years different people had come to take pictures of Celestine, but nobody had ever returned to actually help her. I was really touched by that and I want to sincerely thank every single person who donated to this cause. It is truly a story of SUCCESS. I learned a lot from Celestine’s story, and the most valuable part was that the resources that were needed existed right inside of Kenya. Although I was the voice of reason and coordinated everything, it was my Kenyan Tumaini Community Development Centre project managers, Habakkuk Chebulobe and Maurice Mwanza, who were working on the ground to complete every task that I asked of them. I’d also like to express my gratitude to the doctors and administrators at Aga Khan University Hospital for their dedication in assisting one of their own people with the highest level of professionalism, especially John from admissions and her surgeon, the very skilled and talented, Dr. Mark Chindia. Without all of you none of this could have ever happened.

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I’d also like to take this opportunity to introduce you to another individual who is a part of my Emergency Care Program within the Tumaini Community Development Centre. His name is Willie and I met him on the very same day that I met Celestine. Looking back on that day in May of this very year, I felt so overwhelmed wondering how I could help these two people. But his is another story of success and once again I am amazed at what we have been able to accomplish together with your support. As my educational background is in Nutrition I recognized Willie as being Marasmic (a form of severe protein energy malnutrition) right away. After posting his picture on my website, a long time friend of mine agreed to sponsor him and I would like to show you what he looks like now. After only 5 months of special care and proper feeding, Willie is not the same child – and the smile on his grandmother’s face is worth a million words alone.

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To read more about my small Community Based Organization (CBO) which is located in the Western Province of Kenya, please visit the Web Site at: http://www.tumainicentre.blogspot.com/. We have so many programs which are actively operating on a daily basis that need your attention. Donations of any kind are always welcome and I will be personally happy to keep you updated.

8 OCTOBER 2008

UPDATE!!!!!!

As I write this update, Celestine has just arrived in Western Province again after travelling overnight from Nairobi. Habah went to meet her at the bus station and when he called me to say that he'd found her, he was even laughing he was so happy! Last time he saw her after the surgery in hospital, he was amazed - but now with her new teeth, he says it is unbelievable. Before heading to her village, they will go to the National Registrar so that she can have an ID card processed. She never went to get an ID card before this because she was too embarassed to have her picture taken for it. She has nothing to be embarassed about anymore.

I just want to thank everyone who's contributed to Celestine's case - the donations are greatly appreciated. Next week there will be updated photos of what she looks like now and we'll be starting to build her new home. I can't wait for that!

30 SEPTEMBER 2008

UPDATE!!!!

I spoke to Dr. Chindia again on the phone again yesterday and he never ceases to impress me. He told me that Celestine is happy and healthy and looks great. She could easily go back to her village now but he is keeping her because he wants to see her go with new teeth as well.
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He had mentioned to me that she could get prosthetic teeth before, but in my mind I had expected this to happen months down the road. NO! He had her fitted for them already and they will be ready on Thursday, or Friday at the latest.
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Celestine will be back home by Saturday at the latest, not only without a tumor that has defined her for eight years, but with the best smile in Kenya! Dr. Chindia's words to me were, "I want to to see her go home with teeth. If she has new teeth she will feel good about herself and will therefore heal faster as well." He was also laughing with me when I told him how her father had jumped up and down two times before running out of the house with joy over the news that Maurice gave him.
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Dr. Chindia, you are amazing!

28 SEPTEMBER 2008

UPDATE!!!!!!!

What a great day.
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Habah called me at 12pm from Celestine's bedside. He was amazed. One day after a surgery to remove a tumor that had been growing FROM her mouth, she was eating a solid meal - french fries and chicken. He said he couldn't believe what he was seeing, that it was the same person. Celestine told him that she looked in the mirror and cried for an hour - she hadn't seen her lips for 8 years. He also told me that she had a new personality, that she couldn't stop talking to him about how the village at home would be so surprised, and she had barely said a word on the 8 hour bus ride to Nairobi last Wednesday.
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Later on in the day I asked Maurice to go and check on her children as we'd left them with a caretaker and given them some money for food until Celestine's return. He found them all happy and healthy. Celestine doesn't have a cell phone and neither does anyone in her family so they basically said goodbye to her and trusted that she would be back. As Maurice entered the village, people recognized him and started migrating towards her house where he was headed. They stood around outside while he went in to see her father. They were all expecting bad news - after all, she hadn't returned with him. But when Maurice told her father the news, that the tumor was gone, and she was healthy and returning in a few days, he jumped up and down in the air two times before running outside to tell everyone (Maurice's words!!). He was yelling out "God is Great" and within seconds all of the women from the village were gathered around dancing and clapping. How we managed to accomplish this surgery in so few months (since May the end of April when they saw me for the first time) is truly a mystery to them.
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It's true, I did put everything together for this to happen, but every single step of the way on the ground was performed BY Kenyan's, FOR Kenyan's and they should all be very proud of themselves for that. I know that when I get back there next month, everyone is going to help me to build her a suitable home and support her as she starts her new life over again.
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This, truly, is incredible.
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I want to thank everyone who has already committed themselves to donating to Celestine's cause. We have still incurred some expenses throughout this process which we 'borrowed' from funding from other projects within TUMAINI since it was so urgently needed. I know that we'll be able to replace it through your help, and I am sure that there will be enough left over to build that house next month. I can't wait to post updated pictures. Please email us at flan.amanda@gmail.com if you are able to assist via a monetary donation in whatever amount - every little bit helps.

Where did it happen?!

AGA KHAN UNIVERSITY HOSPITAL - NAIROBI, KENYA

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http://www.agakhanhospitals.org/nairobi/index.asp

27 SEPTEMBER 2008

UPDATE!!!!!!!!!!!!!!!!!!!!
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IT'S OFFICIAL, CELESTINE SUMBA IS NO LONGER A WOMAN DEFINED BY A MASSIVE TUMOR GROWING FROM HER MOUTH.
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Today has really been amazing and it's unbelievable how hard work has paid off. As scheduled, I called Dr. Chinga at 5pm today but the network connection was poor so all I could make out was that it had gone well. Later on in the evening I was able to contact him again and get the full story. He explained that he was able to remove the ENTIRE tumor with ZERO complications. Incredible. It was originating from inside of her mouth and had pushed her front teeth outward with it, so unfortunately they were lost. But, she still has her back teeth for chewing and will be fitted with prosthetic teeth after her mouth has completely healed. Is this really happening? It sounds so surreal. She's going to end up with a better smile than all of us who have had braces in the end!
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Amazingly, even her lips were saved and other than the fact that they are a little sunken as she has no front teeth to support them, Dr. Chindia assures me that you would never know she ever had this massive growth on her face. Tomorrow he will be checking on her and by Monday he will be telling me when she can leave the hospital which will likely be as soon as Wednesday.
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The next question I asked was when we would have the results of what had caused the tumors growth in the first place. EVEN BETTER NEWS. It was a benign tumor, and Dr. Chindia's exact words were "I've seen many tumors, and this one does not worry me at all". She's going to live a normal, healthy life... without the negative social stigma's that were placed on her before. I told the project manager Maurice all about the wonderful news, and he could not believe his ears. He said that there will be one heck of a party when I return next month, and the people in the village are going to go crazy when Celestine makes it back home. I wish I could be there for the grand entrance!
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This is all truly unbelievable. I was prepared to fight till the death of me to get her passport and Liberian visa secured - and never ever expected that just sending her for the simple biopsy would be the end of it after all. The best part is that I'm going to be back in Kenya in just two weeks and will be able to see it all for myself - and you can bet that there will be a ton of pictures to support it in all it's incredibleness!
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Now, for that house...

26 SEPTEMBER 2008

UPDATE!!!!!

Celestine was suppose to be undergoing a BIOPSY procedure today at the Aga Khan University Hospital in Nairobi. I swear I've been on the phone for about 20 hours in total in the las 48 to medical staff in Kenya!!!! But it's all been worth it. Not surprisingly, after a blood test was done, it was found that Celestine is anaemic. I'm surprised that is as bad as it is considering she has a tumor growing from her mouth. As a result, she will be having a blood transfusion this evening.
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Once the surgical team looked at the tumor closely, it was determined that an incisional biopsy would be impossible to perform - and therefore, it has been decided that the ENTIRE TUMOR will be removed TOMORROW! I didn't belive this could be done in Kenya, but apparently I was wrong. I should have more faith in the doctors there. Dr. Chindia, a professor at Nairobi University for Maxillofacial Surgery students will be performing the procedure himself. We have agreed that I will call him tomorrow at 5pm local time to hear how the surgery went. After the tumor has been removed, it will be examined in order to determine what caused it's growth in the first place. Let's keep our fingers crossed that it is not from a cancerous origin. I was really worried that this procedure would kill all of our project funding since MERCY Ships had agreed to do it for free, but it turns out after speaking to the Medical Director, that they can AND are willing to do the surgery under the Kenyan Welfare Program which exists for people in such circumstances!!! This doesn't mean that we don't need any funding - we definetely still do - because all of the costs incurred between doctor visits etc. are really starting to add up. So we are definetely still welcoming assistance with open arms. Not to mention that Celestine is in critical need of a new home which I will personally make sure happens while I am back in Kenya next month.
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I CAN'T BELIEVE IT, TOMORROW CELESTINE'S TUMOR WILL BE GONE!
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I want to thank the team at Aga Khan Nairobi University hospital, especially JOHN in Admissions, Professor of Maxillofacial surgeries (Nairobi University) DR. CHINDIA who will perform the surgery, as well as DR. DIVANI who has been very helpful via email and who is also a Professor and Surgeon in this field. As well, I'd like to thank the chief medical director of the hospital, DR. JOHN TOLE for assisting us with regards to the Welfare Funding Program. Without all of you, none of this would be happening tomorrow.
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Lastly, but certainly not least, I want to thank my dear friend HABAH from Bungoma for accompanying Celestine throughout this journey, waiting patiently in hospital for hours upon hours, and making sure that every step of this process has gone smoothly. THANK YOU HABAH!
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If there was a tool for inserting the sound of me screaming with joy right now, I would insert it now!
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Amanda :)

25 SEPTEMBER 2008

Update:
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Celestine is in Nairobi today. She is being admitted to Aga Khan University Hospital for a blood test, CT scan and finally the BIOPSY procedure required by Mercy Ships before surgery. The bill is not going to be small. Thanks to everyone who has already told me that they will donate to this cause.
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As Celestine is in hospital, we are working from the outside with the hopes of having a local team do a story on her to be show this evenng on the National News in Kenya. Let's get the attention of the government ministers who are responsible for issuing passports! We need one NOW!
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Thanks to Habah from Bungoma for travelling with Celesine for 2 days to ensure that everything goes smoothly for her.
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Thanks to Gamal of Kampala Coach bus lines operating between Nairobi, Kenya and Kampala, Uganda - he allowed Habah and Celestine to travel with them for free (it's an 8 hour journey from her small village in the Western Province).

THE HARSH REALITY

We've struggled for months with whether or not to put this picture up, but it's come to the point that it is necessary. People cannot seem to grasp how urgent this surgery is without seeing it for themselves. Although we have had SO much assistance (and are forever greatful) with sponsorships from the surgical team on the Africa Mercy (see below) and the airline, we still have so many other expenses to cover. Celestine needs to have a biopsy done on the tumor this week and it is going to cost approximately 700 US dollars (and that's not including transportation/food/hotel to travel to Nairobi). She can't have the FREE surgery without this biopsy so we are asking anyone who can, to donate towards her cause. Even if it is $1, every little bit counts. Help us change Celestine's life.

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Email us on how to donate: tumainicentre@gmail.com.

MERCY SHIPS

MERCY SHIPS will be operating on Celestine on the 20th of October. With the date fast approaching we are in a race against time to secure her passport, Liberian Visa, and flight with Kenya Airways. Learn more about Mercy Ships on their website. They are truly amazing!

"The Africa Mercy is the length of nearly two football fields! She has six state-of-the-art operating theatres onboard, and is currently deployed in Monrovia, Liberia. More than 7000 surgeries a year are performed onboard the Africa Mercy."

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http://www.mercyships.org/home

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Take a virtual tour of the Africa Mercy in Liberia!

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http://www.mercyships.org/the-experience

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Stories of others who have had tumors removed in the past! There is hope!

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http://www.mercyships.org/get-to-know-us

18 SEPTEMBER 2008

I'm getting ready to return to Kenya once again and I've got big plans. Celestine is just one part of them! The eyes that you saw in my previous entry below came from this exact same picture, but this time I've chose to show you another part or it, the child that Celestine was holding when I met her. Her baby is too young to understand the situation that she is in, and cannot comprehend the reason that they suffer on a daily basis.

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Over the last 4 months I've been sending emails out to every medical facility on the planet in the hopes of finding a surgical team willing to treat her for free. I've learned that people can be so GOOD through that experience with almost EVERY SINGLE email being responded to positively, with top surgical professionals all over the UK and the USofA willing to do the operation -for no charge. Right now the best option is definetely MERCY SHIPS, a non-profit organization full of volunteer professional medical staff that sail the world helping people with deformities and other medical conditions like hers. They are docked in MONROVIA, LIBERIA (West Africa) right now and after a few emails back and forth, Celestine has been booked for surgery on the 20th of October. That's NEXT MONTH!

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I wish it were only that simple. In order for her to travel to Liberia (WEST AFRICA) she needs 1. a PLANE TICKET (which I am haggling Kenya Airways to sponsor as we speak) which is valued at $1500 USD return trip, 2. a PASSPORT, and 3. a LIBERIAN VISA. In order to get a passport a person has to have a birth certificate and a national ID card. National ID cards are a must by the Kenyan legal system once an individual reaches 18 years of age. We've found out that not only does Celestine not have a Birth Certificate, but she doesn't even have an ID card. The lack of birth certificate was not a big surprise to me after living there for 7 months previously and doing interviews at the childrens homes that attended Tumaini Academy - the reality is that most children in the villages are born inside the home. When asked about the ID card, Celestine said that the Assistant Chief of the area told her she could NOT have one, because of the disfiguration on her face. I am infuriated by this and certainly hope it's not true - I'll certainly be speaking with this Assistant Chief next month. Let's hope for his/her sake that it's not true... I will not be happy (have you seen me get upset?!?!). Right now we are in the process of getting Celestine a national ID card which I'm feeling positive about right now but normally takes up to 3 months to obtain. Knowing a few people in 'high places' is going to work to my advantage this time around. Next we'll get her Passport issued, which will take a few weeks but I've learned that we can get a temporary one for now - so that she can at least travel on the right date for the surgery. The Liberian Visa is another issue. Finding a PDF form on any Liberian government website is impossible, because as far as I can see, it doesn't even exist. The only hope is for me to fly to Ethiopia again soon with my job and get to the embassy there as they don't have one in Kenya. OF COURSE , all of these things cost money...

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I've been sending my programs manager, Maurice Mwanza, to check on her situation regularly and I continually hear about the sad state that her home is in. She is a single mother to her two children but she also shares her home with her father. Her mother passed away a few years ago and her husband ran away when her tumour started growing at least 6 years ago. My friend Habah joined Maurice on the last visit in order to fill out the PASSPORT application form a few days ago and he called me while he was standing in front of her house. He couldn't believe how she was living. His exact words were: "She sleeps on the floor with her father and two children under tattered rags, and when it rains, the house must fill with water". Apparently they also share their home with 2 ducks. Sleeping on a wet, mud floor amongst duck feces is no way to live. I can easily picture it, because I've seen it before - and it's an urgent situation. With her appearance, getting a job is not an option, even if we were to set her up a small road side business selling local food commodoties, nobody would purchase from her because of the taboo beliefs about her situation regarding witch craft. The only option is to assist her in building a small home to protect her and her children, and getting this surgery done.

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HERE IS THE HOME THAT CELESTINE AND HER FAMILY LIVE IN CURRENTLY - COMING SOON - A BUDGET FOR A SMALL HOUSE...

It's a great opportunity to sponsor someone who sincerely needs it. Please check out my old blog: http://www.gone-gone-going-africa.blogspot.com/ and find the story; "FROM RAGS TO RICHES" where you can read about the family we built a home for last year through the help of a sponsor from Canada.

APRIL 2008

You are looking into the eyes of a young woman in Western Kenya. Eyes filled with tears and unable to look directly at a camera out of shame. She's a young mother of two.
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This is her story.
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I had the pleasure of meeting her this May. Truly, it was MY pleasure and one of the hardest things (no, THE hardest thing) I've seen in the country and my travels so far. I've been struggling with what to do with the pictures I have of her since I returned and started updating my blog. That's because the pictures are very difficult to look at, and it certainly doesn't get any easier the second and third time.
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She's been living with a large tumor on her face, growing continuously, for years. Not only does she live with this tumor but also the reality that people in her community want nothing to do with her because of it. Belief in witchcraft is a fact in Kenya, partcularly in the rural areas. The people around her believe she has been a target of witchcraft which is what has caused this growth - and therefore, there is no cure for it. It's best not to be associated with her because the witch doctor could direct their attention towards you next.
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I remember our meeting perfectly. I arrived in the community at the request of an old friend in order to see her. As I stood there swarmed by children and women oggling over the sight of me I saw her walking across a field. I looked at my friend (a Kenyan himself) and said "is that her?" as she walked towards me from afar. Even from a far distance, I could see that she had a black cloth covering something very large on her face. My friend had described the problem as a 'swollen lip', having no idea himself what it was. It certainly was NOT a swollen lip. I had put the meeting of this women low on my agenda due to the inacuracy of his description. After all, I was busy.
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As she approached me I knew that what I was about to see was going to be frightening. She didn't say a word but rather took the cloth off of her face and just stood there while tears filled her eyes. I was shocked. Shocked does not even begin to describe it. I had to ask her to cover it for a minute while I gathered myself. Here was a woman, standing amongst a crowd of people from her own village showing me a tumor that has been growing on her face with tears sprinkling down her cheeks. How do you prepare yourself for that? It is impossible. Never in my life did I expect to see something like this. In our world, things like this are dealt with long before they can reach such a stage and you star to believe, out of naivety, that these types of things don't even exist. I gathered some courage and told her that I needed to take some pictures if I was going to help her. I left her that day with a promise; To do my ultimate best in order to find treatment. Someone to help from outside, as it can't be dealt with in the developing world. That's what I've been doing since.
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The story doesn't get any happier. A week later when I arrived in Nairobi I found a similar case. This time a young boy, only 14, that had the exact same tumor but this time growing internally, inside his mouth. This boy was in a far worse situation as he was already starving to death. So, I added his name to my promise and went in search of treatment once I arrived back in Saudi Arabia on the job with some free time and a good internet connection.
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I sent out numerous emails to different medical facilities within the United States over the next few days. Within only two weeks, I had replies from all of them. EVERY SINGLE ONE. All maxillo-facial surgeons willing to operate FOR FREE. Of course, getting these two individuals to the United States would be the difficult part and still is as I write this. I knew it would be but at least this is the first step. Secondly, an organization called MERCY SHIPS booked both patients for surgery in October. They are currently on the coast of Liberia in Monrovia and will be there until December. I never knew about this ship until I started researching and I highly recommend googling it. If you ask me, it's amazing.
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It was, and is, my worry that October is too far away. Yesterday I got some very sad news from a friend. I had sent him to go and check on the 14 year old boy and have him brought to a hospital for a biopsy in order to determine whether or not the tumor was cancerous. The news he returned with was that the boy had passed away only two days ago. I felt and feel horrible. We didn't even get to tell him that we'd found treatment because I didn't (and don't) want to give anyone false hope until every last detail is arranged and confirmed. This news is what has motivated me to finally talk about the situation on my blog. I'd felt it was to sensitive of an issue and couldn't bring myself to post the pictures for all to see. I've seen tough things in Kenya but I've found myself almost unable to keep myself together over this particular case. I'm more motivated than ever, now, to get this woman the treatment she deserves and in turn help her change her life and circumstance in Kenya. I've chosen not to show the pictures of her tumor but one day, when she's been treated I will show them with the before and after shots. I can't wait until that day comes.
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Please keep reading for updates. I'm determined to do this and could need your help soon.