LFCT @ Work
MUHAMMAD HUSSAINS STORY AND DREAM COME TRUE
24 October 2016
This, is a story of devastation, hope, unconditional Love and how complete strangers pulled together, and restored some Faith in Humanity by being a part of making a terminally ill Child’s Dream Come True.
Muhammad Hussain was born to ecstatic parents, Fahrad and Kaamielah, on 15 September 2009.
For the first six months of his Life, Muhammad was a happy, bubbly and normal baby. He was diagnosed and hospitalized with Hemophagocytic Lymphohistiocytosis (HLH) in August 2010, and spent his first birthday in hospital. HLH is a very rare blood disease and immune system disorder, and per Swedish studies, occurs in 1 / 2 cases per million, usually in infancy or early childhood.
After starting a search for a bone marrow match due to HLH, Muhammad was diagnosed with Acute Lymphoblastic Leukaemia in February 2012, at the age of 2.
Muhammad’s Mommy is a nurse, and the Family was on her medical aid. They had to make a very hard decision, that Mommy would continue working, mainly to keep Muhammad on medical aid, as no medical aid would accept a newly diagnosed child with cancer. Daddy, who was a pharmacy assistant and then sold toys and clothing after Muhammad’s birth, would become Muhammad’s primary care-giver.
For a Man, to step down as his Family’s breadwinner, and to commit to around the clock care for his Son, had a huge impact on this Father’s Life. For many months at a time, while Muhammad was in hospitals for treatment, often very far away from their home in PE, he would not have his wife, family or friends to lean on for Support. Mommy had to get up daily, and knowing her boy is sick, had to put on a brave face, and take care, quite often, of complete stranger’s children, while she could not be with her own.
The emotional, social and economic strain, has been tremendous on these incredibly brave Parents.
In February 2012, the Little Fighters Cancer Trust did a Bag of Hope delivery to all the children and parents in Red Cross War Memorial Children’s Hospital. Muhammad and Daddy, was in the back-left room, at the end of the hall, and one of the last room visits we did that day. When we do a Bag of Hope delivery to a Hospital Ward, we liaise with the Hospital beforehand, and this time around, we were made aware that there is a Father as one child’s bedside care-giver. Up to then, we had always packed Mommy Bags, but we quickly adjusted, replacing female toiletries and sanitary products, with male goods. This was the first Daddy’s Bag of Hope we ever packed.
The impact of meeting Muhammad’s Daddy for the first time, will stay with us for Life. When we walked into the room, it was slightly dim with the lights off, Muhammad was in the bed with his back to the door, and Daddy got up and with a very puzzled look on his face, greeted us, not quite sure who these strangers were.
I got to the room first, and full of smiles, explained who we were, and that we had brought gifts for him and Muhammad. A supply of food and toiletries for Dad and toys, snacks, toiletries, blanket and more, for Muhammad.
What happened whilst I was smilingly talking, will stay with me until my last days here on Earth. This Father’s face changed, he walked right into my arms, and broke down in tears of gratitude. You see, he had been in that hospital room for months, without any assistance, friends and family. He is short in stature, and I remember turning my head to one side so that he could fit into my embrace tighter, as he was clinging, not onto me, but onto hope.
With my head turned, my eyes were directed at the shiny hospital floor, and for the first time in my Life, I saw tears literally bounce on the floor. Now, I have one rule in a Hospital Ward, and anyone who has ever joined us for a Hospital Outreach or Delivery knows….YOU DO NOT CRY. If you can’t handle what you see, walk out.
This was a situation I could not walk out from. I bit the insides of my cheeks and tasted the frankness of blood in my mouth, the saltiness of almost-tears, thick in my throat. I had to get backup, so after a while, I excused myself, promising I will be right back.
I went looking for Tommy, who was busy with parents in another room, and by the look on my, forced smiling face, he knew he needed to come with me. If you know Tommy, you will know, he is a huge man. That day, in February 2012, he left the hospital with the entire front of his 5xl shirt, sopping wet with another Father’s tears.
We drove home in stunned silence, having experienced much up to then, but nothing quite like this desperation, forlornness and gratitude. With Muhammad’s Daddy’s number exchanged, and the promise that we will always be on the other side of a message or call, Muhammad and this Family was registered as one of LFCT’s first Families.
Muhammad and his Daddy was sent back and forth between PE and Cape Town for treatment, and when Mommy could get leave, she would come down to Cape Town for a few days at a time, to spend time with them. We would try and make it possible for the Family, whenever Mommy was here, to have a break from Hospital stay, and a semblance of normality, as often as Muhammad’s treatment allowed. We did these break-away long-weekends for them with the generous help of the Mandela Rhodes Place Hotel, who would sponsor us complimentary accommodation, and would even take care of their meals.
We try and do home visits with our LFCT Families all over SA, as often as we can. We try and fit in a few Eastern Cape Trips every year, and during these trips, we have visited Muhammad and his Family at their home. We do home visits, as many people who end up relying on outside assistance, never needed assistance before in their Lives, and they are often reserved about their needs, which was the case with Muhammad’s Family as well.
We have always been met with such warm and true hospitality and excitement, and I must mention how incredibly impressed we have been with every of our visits, at how good Muhammad is being taken care of. You walk into their humble home, and everything sparkles, from top to bottom. Having a Child with Cancer means that you are constantly battling infection risks, as they have no immunity, and Muhammad’s Family did everything humanly possible to make his environment safe.
Through the years, we have always tried to provide what the Family and Muhammad needed. Whether it was beds, PediaSure, nappies, clothing, food…..we were never asked, we had to really drag their needs out of Daddy. When we would visit, Daddy would very proudly show us through their home, Muhammad’s pink room, and show us that they still have what we gifted them with, and that it is well taken care of. During our last visit, Daddy took us to the lounge, and pointed out the cushions on the bamboo suite, saying how he will never get rid of those cushions, because they are a daily reminder of where they came from, as these cushions was their beds before we sent them beds, after having found out that they did not have any.
Through hours of conversation, listening, reading between the lines and meeting the Family as often as we could manage, we built, not only an LFCT working relationship with Muhammad’s Family, but a friendship, based on mutual respect and love.
Muhammad relapsed twice in the past two years, and our hearts were broken with Mommy and Daddy’s. One is at a complete loss of words when a Parent asks you, WHY? Muhammad needed a bone marrow transplant as last hope.
Stem Cell Donor Matches depends on genetic make-up, and the chance of finding a match is 1:100 000. Finding a stem cell match for a patient like Muhammad in South Africa, is no easy feat. The latest available statistics from the South African Bone Marrow Registry, lists less than 72 000 registered stem cell donors in total.
Added to the challenges in the search for a bone marrow match for Muhammad, is that he is part Indian, part Coloured. Matches are 100% dependant on ethnic makeup. This has caused great concern to Muhammad’s parents, as a mere 6.5% of registered bone marrow donors are Coloured and Indian/Asian donors comprise of only 9.4% of the total donors.
The Little Fighters Cancer Trust assisted the Sunflower Fund in promoting two donor drives, encouraging more Coloured and Indian people to register, one drive in Cape Town, and one in their hometown, Port Elizabeth.
You are welcome to watch this short video we put together to aid in pleading for more people to step up and register: http://match4me.co.za/index.html
(For more information on stem cell donations or other FREE REGISTRATION OPPORTUNITIES, call 0800 12 10 82)
Despite efforts locally, and Muhammad’s treating oncologist also searching the International Bone Marrow Registry for a potential match, no match was found for Muhammad, and conventional treatment resumed in form of chemo, and then later, maintenance.
In mid-2016, the Doctors basically told Muhammad’s Family that there is not anything more which could be done medically, and treatment will just be given to afford him more time and comfort.
It is during this time, that Daddy started talking a lot about Muhammad’s dreams. In a position where he could, financially, not make any of his Child’s dreams come true, he blamed and hated himself. For us, at LFCT, the Parent’s and Family’s well-being, is just as important as that of their Chancer diagnosed Child.
We listened, we also heard the disappointments….and when Daddy sent through a photograph of Muhammad on his birthday, in his best suit, with a beautiful cake which someone had gifted him.…but all alone, as he could not be around other children out of fear for infection….our minds and hearts started working overtime.
We are a small Organization and the past year, has been tremendously tough for us, as our donations have dropped with almost 60%. Despite this, we have managed to keep afloat, and have been continuing our Support to the 130+ individual Childhood Cancer Families registered with us, and have done as many Hospital Ward deliveries and gifting, as we could manage, on half a shoestring.
So there we sat, no money to make Muhammad’s dream come true, and prevent his Parents from having this burden of guilt and disappointment for years to come. During the first week of October, it became very clear to us, just how big a deal this seemingly unattainable dream of Muhammad’s was. Not only for him, but for the mental and emotional state of his Parents as well.
If you know us, you know we don’t often get stopped by not having money. Where there is a will, there will be a way, you just need to think quick and not be shy to literally….beg. So we hit the phones.
Diane Cleary from the Flight Centre Foundation has done a few projects with LFCT before, and she had also met Muhammad and Daddy with one of the Hospital Ward gifting deliveries, sponsored by FCF. Diane was also our go-to-gal when it came to making sure that Muhammad had his PediaSure, so she was aware of Muhammad and his journey. There was no doubt and no hesitation from Diane after listening to what we were hoping to accomplish, to jump right on board.
Our first snag was, a massive rugby tournament and school holidays, which meant that flights and accommodation was virtually impossible to find in Durban for the week which we had planned. Through ComAir, with whom Flight Centre Foundation often works, we were given complimentary return flights for Muhammad, his Mommy and Daddy. A lovely lady by the name of Nicole authorized the tickets, and we just needed to find accommodation so that we could book.
After a crazy search for accommodation, and our request being turned down numerous times, we remembered that Mandela Rhodes Place in Cape Town, is part of the AHA Hotel Group….and they have hotels in Durban. A quick call to the GM, Debbie Sykes, who knew Muhammad and Family personally from their visits to MRP, and Debbie initiated an email including many stakeholders within the group, and not one, but TWO of their Durban Hotels, offered to come on board. The Square Boutique Hotel and The Riverside Hotel and Spa, would each house Muhammad and Family for three days.
Of course, it was a huge concern for us that the Family would need to be mobile and would have a vehicle to their disposal for the originally planned, six-day trip. Muhammad was medically cleared by his Doctor for travel and the activities planned, but we also know how quickly, things can go wrong, and did not want them stuck without their own transport. Flight Centre Foundation understood this, and offered to pay for the 6 days’ worth of car rental.
Then, all that was left, was uShaka Marine. Ann Kunz from uShaka was most accommodating after hearing what we planned, and was happy to arrange a special visit and interaction with a dolphin, for Thursday, October 13th.
All was set, Muhammad was doing well, tickets, hotel, car rental, dolphins….booked and confirmed, and Muhammad, Mommy and Daddy, flew out of PE at 13:15 on Monday, October 10th.
Our incredible LFCT Representative, Vasie Naidoo, met the Family at the airport, and accompanied them to The Square Hotel, which was where they would spend their first three days. Before having gone to the airport to meet them, Vasie had decorated their room with welcome banners and a whole lot of special treats and toys for Muhammad to find at arrival. The Hotel staff had also gifted him with a huge soft toy dolphin, and even made dolphins from fruit as a treat for Muhammad.
Oh, how happy he was those first two days. Our boy loves fast cars, and Vasie had arranged a drive in a super-car for Muhammad on Tuesday, which Muhammad absolutely adored, despite having had some pain in his legs. The highlight though, was when he received the pink roller skates he has wished for! Even with wobbly little legs, he bravely tried them on, and they were bought in the brightest shade of pink, as that is Muhammad’s favourite colour.
On Tuesday night, just after 21:00, we received a call from Daddy to say that they are at uMchlanga NETCARE Hospital, which is only two minutes away from The Square Hotel, as Muhammad was not well. Vasie and her husband, Seelan, went to the hospital to Support the Family. A night of drama ensued, as Muhammad’s platelet counts were 0, and his condition started deteriorating very quickly.
Yes, everyone was aware of how and that, things could go horribly wrong, given Muhammad’s medical condition. We kept believing that he would pull through as he had done so many times before, but by Thursday morning, when his 09:30 experience with the dolphins at uShaka Marine World was set up for originally, it was clear that this, would not happen for a while.
Muhammad was eventually moved from the Paediatric Ward to ICU, and his condition worsened daily. Booked to fly back that Sunday morning, we knew he would need to stay in hospital past their planned return date, and this is where we must mention our sponsors again.
Every single Sponsor, was so concerned with Muhammad, and truly heartbroken, as it seemed at that stage, as if he would not have his dream come true. We barely had to ask, everyone was most accommodating.
ComAir, I must mention Mia, as she booked, rebooked, cancelled, reticketed, reserved seats on flights and truly, they went out of their way, right at our sides, even on days that arrangements and plans changed ten times a day. She also found ways for us to get Muhammad to Red Cross, but that was not an option, because of his high infection count, he had to go back to his doctor in Port Elizabeth.
Flight Centre Foundation continued without a single word of gripe, to pay the rental car indefinitely. The staff in various offices, started a collection for Muhammad, and gifted Daddy with a cash amount to help out. Karen from Flight Centre Durban, also went to visit the Family at hospital, to make sure they don’t need anything.
The Square Hotel extended the Family stay, as they were closer to the hospital than The Riverside, and they went out of their way to ensure that the Family has their own spac4e to bath, get a few hours of rest, could eat, and their staff and management made daily visits to the Family at Hospital.
Vasie and Seeland drove up and down, day and night, to be right next to Mommy and Daddy during this time, and taking care of practical needs such as washing and ironing their laundry.
Yes, we might be based in Paarl, 2000+ kilometres away, but we were right there, next to them, every step of the way, and from the bottom of our hearts, we are grateful for all the incredible people who Supports LFCT and who shared this Support directly with Muhammad and his Family.
On Tuesday, the 18th of October, two days after the Family was initially supposed to be home, emotions ran high as there was complications getting Muhammad a medical flight back to Port Elizabeth. At this stage, this was the main concern, and although it broke our hearts that he had not been able to touch his dolphin, getting Muhammad and his Parents home, was our first priority.
While the hospital and medical aid battled out the transport issue, we started making some calls, and nothing seemed to work out. Once an airline who does stretcher flights was found, they did not have large enough aircraft between Durban and PE, so that was scratched. A private service would have cost in the region of R77 000.00, and with only R5000.00 in LFCT’s bank account on that exact day, this was not an option, or else we would have just booked it. Then, a Samaritan from PE offered his private jet for use, and it seemed as if this was the solution, but the aircraft was not able to carry an oxygen tank, which Muhammad needed. Muhammad had coped without the oxygen tank for three hours the previous night, so it was aimed to take this option, if he could manage a little longer, and if the doctors was comfortable that he could travel without an oxygen tank. The option for getting him to Red Cross was also still there, and his infection count had dropped from 600+ to under 300, but would still pose a threat to other children in the Paediatric Oncology unit, so this was not to happen.
In-between all of this going on, Muhammad’s Parents was having an exceptionally hard and emotional time. The nights especially, when medical aid and hospital administration offices were closed and no one could be reached, was the worst, because with the darkness, fear and anxiety grew. Wednesday night especially, was highly charged, and Daddy was pushed well beyond any human limits.
After long conversations, lots of tears, venting and crying, Daddy had made up his mind to make an appointment with the Hospital General Manager, who turned out to be a man with an incredible heart, Mr Marc van Heerden.
Marc van Heerden afforded Daddy the time to tell Muhammad’s story, and to share his dream of touching a dolphin, and that being their reason for being in Durban, and it turned out that there were some similarities between Muhammad’s situation, and that of a close relative of Marc’s, who had lost their Fight against cancer.
As soon as Daddy had his meeting with Mr. van Heerden, we spoke on the phone, and having had been treated with utmost respect and understanding, and having left the offices with a promise that Marc was going to do all he possibly could to get them back to Port Elizabeth, Daddy was calmer and was once again, given hope.
A little over an hour after this conversation with Muhammad’s Daddy, my phone rang, and absolute excited chaos ensued. Daddy was excitedly crying, and the first words he said was, “Mandie, I did it, my baby is having his dream after all, and we are going home”. This Father had persevered, six and a half years, and could finally, say those words.
Now, you must understand, that conversations with a stressed and emotional Parent, can sometimes be very confusing, with crying and fast talking, and I did ask numerous times, whether he was SURE this was all happening. THEN only, did we get excited!
Immediately, Vasie was called, and told to meet the Family at uShaka Marina World as soon as possible. Vasie had taken their laundry home to have washed, but dropped everything, and was off to uShaka.
The following events, we are not too sure about, as everything wahttps://www.facebook.com/257641367590340/videos/1241781269176340/s arranged by Marc and NETCARE911, but Muhammad was taken to uShaka Marine World by a mobile paramedic unit, support vehicles and staff as soon as he could be prepped in ICU. The Family was met at uShaka by Ann Kunz, Vasie and several media sources, and even though Durban’s favourite Dolphin, Gambit, was busy with a public show, Muhammad was carried out on the stage area, and Gambit came to meet him, surrounded by animal trainers, medical staff, LFCT and his Parents. Daddy, even in the excitement, had also called The Square Hotel’s GM, James, and asked him to join them for the experience.
Sitting in Paarl, knowing that all of this is going on, and not wanting to call anyone or ask with messages, how things are going, was horrible. We knew things was crazy and chaotic and Muhammad was first priority, so we waited….
And then the first photograph came through.
What a moment. It is truly indescribable. It was an ugly-cry moment on our end, as just a little boy’s hand on the nose of a dolphin, summed up a hellish, long, painful road which finally, had come to a moment in time where there was pure happiness and joy, even if only for a few minutes of his Life.
Muhammad and Gambit shared a few moments, and the crowd was silent, respectfully giving a little boy something which meant the World to him and his Family at that moment in time, and an awe-filled silence filled the arena.
Muhammad was then taken back to uMchlanga NETCARE Hospital for preparations for their flight home, and the NETCARE911 jet was already waiting for them at uShaka International Airport. The NETCARE911 paramedic team as well as Mr Marc van Heerden and LFCT, accompanied the Family to the airport, where Muhammad was made comfortable in the aircraft, and wheels lifted just before 15:00.
From the Little Fighters Cancer Trust’s side, there is so many individuals and sponsors we would like to thank.
Vasie and Seelan Naidoo, our KZN Representative and husband, who was with Muhammad and his Family every step of the way, from landing in Durban, through medical trauma, and in the end, the full circle of Muhammad’s dream come true.
Diane Cleary and the Flight Centre Foundation for making the original sponsorship arrangement with ComAir, and for covering the payment of the Family’s rental car, even long after what we had originally asked for.
Flight Centre Staff all over the country, for the cash collection they gifted the Family to make things easier, and for all the emails asking how Muhammad and Family is doing, and Karen from Flight Centre Durban, for visiting the Family at hospital.
The AHA-Hotel Group, especially Debbie Sykes, who responded without delay, and contacted the Durban Hotels win the group on our behalf. The Square Hotel and The Riverside Hotel, who both offered sponsored accommodation. The Square Hotel for extending accommodation indefinitely, once the situation changed medically, and wanting to house the Family, as the hotel is so close to the hospital. We would like to thank the GM, James McNicoll and Manager Janet Govender, and all their staff, for caring.
ComAir, Nicole, and Mia. We spoke with Mia mostly, and this lady went over and above for us, she truly did. There are rules in the airline industry concerning leaving tickets open, reissuing, rebooking, reserving seats, and Mia plus all behind the scenes who made it happen, never said no.
Vebeshin Naidoo, who took Muhammad for a drive in a beautiful super-car, which thrilled speed and car loving Muhammad tremendously, and spoiled Muhammad with a sit-in mini-0version of a super-car as a gift.
Katrin Jansen van Vuuren, LFCT’s Johannesburg Representative, who had a hand as well, but does not want to be mentioned.
Kargo National, who is LFCT’s Transport Sponsor, for collecting all the Family’s belongings from Vasie in Durban, and delivered it to their home in PE just this morning, without charge, as there was no space for luggage on the medical flight back home.
Marc van Heerden, in both his personal and professional capacity, uMchlanga NETCARE Hospital and NETCARE911, the Paramedics, Doctors, Nurses and all involved.
uShaka Marine World and Ann Kunz for, not only once agreeing to make Muhammad’s dream come true, but twice! Animal trainers, staff and all the public who was in the middle of a paid show when Muhammad was brought in for his experience, for their patience and understanding.
Gambit, the beautiful dolphin, who I swear, looked as if he understood the situation perfectly, for being absolutely amazing at the perfect time.
There are so many people who was involved in making Muhammad’s dream a reality, and we cannot possibly know each one by name. Many worked behind the scenes, but we would like to include you ALL in a MASSIVE THANK YOU.
Fahrad, Muhammad’s Daddy, sent the following through as a message, and asked that we include it in this post, and asked us to include photographs of Muhammad in years prior to now, as well as photographs not yet seen by the public, as we kept much private, because this was about Muhammad, and not the PR.
Sharing this entire story and the attached photographs and videos, in some way, is also Muhammad’s Family’s way of dealing with their current situation, which is that Muhammad is receiving Palliative care, and probably will not go home again. If sharing Muhammad’s story and how his dream came about in the end, brings the Family some comfort, we are happy to oblige.
“My heartfelt thanx firstly goes out to Mandie Erasmus an Thomas Engela and LFCT team for the support they had given me from 2012 until now. I'm shocked beyond belief that they have not left my side, even when other organisations left me an kept me in the dark.
As a man I had not left my Baby’s side from 2010 until this present lifeless state that he is in. Even though time has come for Muhammad to be with God Mandie has still not forgotten us, she has been my inspiration of the past 4 an half years since we met.
It is through LFCT that I am motivated every day. Nobody knows a pain like a cancerkid and nobody will know until death stares you in the face. Today we have beds to sleep on had it not been for Mandie and Thomas in 2012. I'm not ashamed to say it, I couldn't afford a bed but I could afford all the time in the world to give my kid all the love and attention. At times Mandie phones me and says do you need anything, I declined and say no. The reason I say no, is I always think there's a family less fortunate than us, many will find fit to use an organisation to let greed overcome them to get things, but once you go down that line you lose the purpose of caring for your sick cancerkid and u will want Worldy and monetary values before life.
I put my son first before anything else in life. I never knew this day would come after all the sacrifices my wife and I put ourselves through for Muhammad… to plan his death but rest assured I have been a poor man but I gave my son the richness of this World, and that is love. Many won't value what you have in front of you, but hopefully, seeing him touch the dolphin in his death will be an eye opener for many, that when a father cried out for help not because he wanted a big balance or things, he wanted support and love and care. As much love, I gave my son, in return Mandie and Thomas gave me.
Thank you Mandie and Thomas you are angels in disguise. May the good that u did for Muhammad have God bless your organisation and may people see fit to give to a deserving an caring organisation like Little Fighters Cancer Trust, for they don't discriminate and say, ai you are Indian, you have different emotions from other kids and parents. Mandie and Thomas walked this journey with me and still feel and share the same pain has me and my wife.
I would like to thank all supporters on this page for being there for us and I wish like to thank Little Fighters Cancer Trust and NETCARE911 and paramedics and Mr Marc van Heerden to make it possible for the dream to come true that LFCT planned prior to him getting sick. Also of course Flight Centre and The Square Hotel for making it possible to see my sons dream an allowing me to be close to him with the accommodation and transport and also with their moral support and best of all the love and caring and ComAir for our commercial flights. Vasie and Seelan also, who are now our friends, and who, as strangers, stood by us night and day in Durban, from when we landed, to when we left.
God bless you all.
From Muhammad and Parents in PE”
Please watch this incredible video, published on the NETCARE911 facebook page, showing the very special ride to Ushaka Marine World, meeting between Gambit and Muhammad, and Muhammad’s departure back to Port Elizabeth: https://www.facebook.com/257641367590340/videos/1241781269176340/
We will continue to update you on Muhammad on our page, and we ask for continued prayers for Muhammad, his Mommy Kaamielah and Daddy, Fahrad Hussain.
THANK YOU ALL for being a part of Muhammad’s Story and Dream.
(Photographs provided by Muhammad's Family, with permission for Little Fighters Cancer Trust to publish)