By Pritesh Gandhi - During our cousin Achal's wedding in London, we wondered where and when our next family reunion will occur. Our discussion usually took us to exotic destinations and our imagination generally led to hysterical laughter--primarily because we knew we were not known to be overly adventurous! When we came up with the notion of climbing Kilimanjaro, as always, it was humorous at first but it quickly hit an intriguing nerve in all of us. Perhaps it was because we were all "Out of Africa" for over two decades and it would be really great to go back to our roots. Perhaps it was an awesome idea for a family reunion that was not the usual wedding or baby shower. Perhaps it was because many of us are almost hitting our 40's and it was a mid life crisis thing. Whatever the reason, the Kilimanjaro idea gained traction and inertia. We researched several outfitters and in classic Gandhi style conducted numerous conference calls to discuss travel dates, plans, agents, equipment and most importantly what food we were going to eat!
Kilimanjaro was becoming a reality. Now, it was time to make the trip even more meaningful. Given that I work for a company that focuses on rare diseases and our nephew, Yash Gandhi, passed away from a rare genetic disease, we thought we should dedicate this family reunion to Yash and other children with this disorder.
I distinctly remember when Yash was diagnosed with i-Cell and vividly recall his last day with us. Yash continues to have a lasting impression on all of us that knew him. His charm was strikingly cheerful and he persevered through physical and mental challenges with immense strength. (Interestingly, humor and will are attributes that got us to the summit). We wanted to make a small but meaningful contribution to children with I-cell, their care givers and most importantly create world wide awareness of the disease. I clearly remember calling my cousins Hetal and Achal, who have conducted numerous charity drives and discussing the idea of anchoring the climb to the Yash Gandhi Foundation! They loved the idea and we quickly socialized the concept with the rest of the team. As usual, without any hesitation, we were united and focused our attention on making the Yash Gandhi Foundation at the center of the initiative. Ashesh and Sonal were very grateful for dedicating this initiative to children with i-Cell.
Together, without any true expectations, we reached out to companies, families and individuals to support Team Kili for I-Cell. Our principal aim was to create global awareness of I-Cell. Our plan was to use the progress towards the summit as a vehicle to drive traffic to the Yash Gandhi Foundation website. A family member donated her valuable time to develop a highly professional and sustainable website so as to connect families, care takers, clinicians and scientists. The Yash Gandhi Foundation website was fully functional in the Fall of 2012.
As time progressed, we trained at and changed our eating/drinking habits. I went to the gym at least five times a week. Alternating between 5 K runs in Boston along the Charles, the step master, spinning classes, swimming, the elliptical and muscle conditioning classes with my wife Nital. I was in the best physical shape that I had ever been. Furthermore, I cut my carbohydrate intake as well. Ronak and I climbed White Mountains in NH a couple of times. My philosophy was that although we could not train for the altitude, one factor that I could train for was stamina and physical fitness. Overall, I felt good about myself and most importantly the cause.
Support for the Yash Gandhi Foundation from friends, family and companies was unexpected, overwhelming, encouraging and inspiring. Our parents and kids played crucial roles in spreading the word. Nital's Mom knitted clothes for the girls' year-end fundraiser; proceeds were donated to the Yash Gandhi Foundation. My Dad wrote hundreds of emails to various families and acquaintances located in numerous countries. Overall, the reach was global. Now, the pressure was on for us to get to the summit.
Before we knew it, Team Kili for i-Cell was in Moshi, Tanzania for our pre-climb orientation with our outfitter. Water consumption and breathing tips were paramount. Our guide, Gaspar, told us that a pulse oximetry of less than 68 would be concerning. I remember looking at each other and thinking that a pulse ox of 68 would mean that we would be somewhere in an ICU on a ventilator.
Interestingly, the rest of the porters were selected after we reached the gate. We were getting restless as we waited for over 1.5 hours to commence our ascent. After watching some monkeys and taking some pictures, we finally began snaking through the dense rain forest of Mount Kilimanjaro. After a 5-hour hike in the rain, we successfully reached Machame Hut at 3000 meters. I felt good and was really hoping the rest of the climb would be the same. At dinner, we had leek soup (a standard every night going forward), rice and vegetables. Dinner was good and Swetal even asked our waiter, Prosper, for the recipe to which he responded..."welcome"! After every dinner and breakfast, we checked our pulse, oxygenation and temperature. My saturation over the rest of the climb ranged from the mid 70s to the mid 90s.
The following morning, we had our breakfast which generally consisted of eggs and toast and were off to Shira Hut. Because we did not want to carry the red lunch boxes, we opted for a hot lunch at the camp site. This was probably not the best idea for me because it took us over 4.5 hours to get to the camp site and I arrived with a slight headache. By now, I was already getting sick of eating granola bars. Our meal conversations generally included a strategic plan for going to the bathroom, Ronak's amazing sleeping patterns (he can sleep anywhere) and bets around the table and what our oxygenation readings were going to be.
Every morning started off being clear and as we began our climb, the clouds got thicker and a mist followed us until we got to the camp site. Day 3 was bad for me as it was for the rest of us as well. A six hour assent to Barranco camp took us over 8 hours. The terrain had changed from rain forest to shrubs to rocks. Considering my experience on Day 2, the dreaded red lunch box consisted of tasteless food that I had to force myself to eat. We finally got to camp and the team decided to go directly to the camp site as I went to register the team. We were all anemic at dinner and I had a massive headache. If Day 4 was going to be anything like Day 3, I knew I was going to second guess myself on getting to the summit. Ashesh gave an encouraging pep talk to the team before we retired for the night reminding us that kids with i-Cell suffer on a daily basis with breathing and feeding issues. I believe we all took this to heart and was a much needed reminder of our purpose. I had a couple of bites of pasta and went right off to bed before checking my oxygenation which was in the mid 70s.
We woke up to a spectacular view of Barranco Wall. I slept well and was pumped. Actually, I think we all were. Barranco to Karanga was supposed to be a three hour hike and we completed it in less than three hours. We were all in good spirits and had good laughs that night - mainly because Ronak kept us entertained.
Below are some one liners from Ronak:
1. Can we pray to the Swahili sun God for some warmth and sunshine?
2. This food is just NASTYYY!
3. This is the best rock in the world I have ever sat on...ever!
4. Why are the porters listening to Chinese radio?
5. This is the best toilet ever...I even played a couple of games of solitaire!
6. I am so frigid (this has a different connotation in the UK).
The following day, we were off to Barafu camp. It was getting cold. Although it was supposed to be a three hour hike, we reached Barafu after 4ish hours. After lunch, we went to our tents to prepare for the night climb. We brought Mac and Cheese with us and we asked our cook, Amadeus, to prepare it for dinner. Dinner was early and the Mac and Cheese turned out to be a soup. I am glad that Swetal did not ask for the recipe.
Well, it was indeed a trip of a lifetime for a truly noble cause. The support was heart warming and inspiring. The donations were unexpected and incredible, and will go directly to fund translational research towards finding a cure for I-Cell. In order to achieve this goal, it does not end here. Please keep spreading the word and make sure you join us for our next adventure in the pursuit of making a difference in the lives of patients and their caregivers.