Having traveled to Oldeani and the Rift Valley Children’s Village for the last two days, it was not time to focus once again on FAME. Today, we would be expecting a group of patients from the Tarangire region, an area that is well outside of the Karatu district but have been coming to see us now for several years. Exactly how this relationship began, I can’t exactly remember, but from a standpoint of having longitudinal care, which is really what our impact has been here, this group has been very good about continuing to come back to see us. The linchpin, though, has been Chief Lobulu, a lovely Maasai chief who has continued to seek out patients with neurologic illnesses among his villages for several years now, and has helped arrange for their transport to FAME as well. Though we have never fully worked out the logistics for this arrangement, as FAME is not in the practice of paying for patient’s transportation to Karatu, we have tried to work with Lobulu as closely as possibly to ensure that this very needy group is able to get to see us.

For perspective, the Tarangire region, which includes a fairly large game park, is about 1 ½ hours away from Karatu and is on the road to Dodoma after the turnoff that we make to head towards Lake Manyara, Karatu, and, eventually, Ngorongoro Crater and the Serengeti. The area is fairly dry and dusty and, though there is some farming, the land is mostly good for grazing animals, which is good for the Maasai. Chief Lobulu lives not far from the entrance to the game park, and we have visited him on several occasions as we used to go to Tarangire on one of the Sundays when the rotation was still four weeks. The area is a mix of traditional Maasai bomas and classic Bantu houses. Lobulu, with his boda boda, or motorcycle, will ride around to the various villages in his area looking for patients for us to see, and, when he comes, I will typically reimburse him for the cost of the fuel necessary for his roaming around the countryside in search of patients for us.

The patients he brings are all incredibly appropriate and have included lots of different epilepsies as well as other basic neurologic illnesses. Several years ago, he brought two older adolescent boys with Down syndrome to see us, neither of whom really suffered from any specific neurologic issue but was hoping that we had something to offer them. After we saw them, I discussed the issue more with Kitashu as I thought there might actually be something we could do to help. In 2019, when Marissa Anto first came to FAME with me as a resident, she wrote a short story about one of the children she had seen with Down syndrome (https://fameafrica.org/journal/2019/10/4/theres-no-word-for-downs-syndrome-in-my-language?rq=marissa) and the fact that it was difficult for the patient’s mother as Down syndrome was not something that was discussed here. It is a lovely piece, and I would encourage everyone to read it.

In the US, though there are no simple answers, and families with Down syndrome children still lack the type of support that is appropriate, the one area that we do already have support for is their education and the fact that these children remain in school until they are 21 years old, being taught life skills and other things that interest them. Unfortunately, in Tanzania, education is not guaranteed until the age of 18, as it is in the US. If you don’t pass the national exams after primary school here, then you do not continue with your education. Very short and simple. Finishing your education at age 13 is far different than at age 18 (or 21 in some situations) in regard to your level of maturity and the ability to go off on your own such that the likelihood of failure is far greater given that fact. What I was hoping to do for these two boys was to find some type of vocational rehab for them that would give them the hope of some sort of self-sufficiency in the future where they wouldn’t be a total burden on their family. Kitashu, who is relentless when it comes to searching out this type of information for anyone, but especially if they are Maasai and, even more so, if they are in need of help.

Kitashu was able to locate a rehabilitation center that was not far from the children’s home and, after a visit by the children, their families, and Chief Lobulu, was acceptable to everyone. All I had to do now was to raise enough money to send them to school for necessary 2-3 years to complete their vocational training. After setting up a GoFundMe page for the project, I was able to raise enough money for their tuition and living expenses. Amazingly, both the children were able to complete training, one as a tailor, and the other a welder, and are now back in their villages. Though I have been unable to visit with them since they’ve been back, and I’m unsure of whether or not they have been able to be employed, I do know that they do now have the skills that will ultimately help them. During his visit today, I did ask Chief Lobulu how the boys were doing, and it did seem they were well. With Kitashu’s help, I’m hopeful that I’ll soon learn more and even be able to visit with them soon.

We spent the day seeing the approximately 15 patients who had come together from Tarangire, many of whom were returns, though some who were here for the first time. The biggest problem we have with the group is how to supply them with the necessary medications given their distance from FAME. For most patients, they must return to FAME for their refills, but that has not been possible for this group of patients, and it was not uncommon for them to return reporting that they were well for several months after seeing us and until they ran out of their medication. Kitashu does his very best to send the medications to them when he is aware of what they need, and though this has made a difference, there are still occasions where it has not happened as we would have wished. We continue to subsidize some of the cost associated with the medications, but even that is often not enough. There is still room for much improvement, and we will continue working with Chief Lobulu to help with these patients he continues to bring to us who are in need of neurologic care.

One the things I haven’t mentioned in some time, if ever, is the logistics of seeing our outpatients here. When patients come in to be seen, their history is taken, they are examined, and then we discuss what our differential is and what testing, if any, is necessary before developing a treatment plan. This will often involve basic laboratory tests, some of which we don’t really consider in the US. Checking a sputum for AFB staining (i.e. tuberculosis), is a special circumstance and something we don’t do often in the outpatient neurology setting. On the other hand, testing for malaria and brucellosis are things that are common here and can often present with neurologic manifestations. The point is, though, that patients are sent to the lab for blood and urine studies and then wait until the results have returned, usually within an hour or two, to be seen again to review the results and before any medication prescriptions are given. This is obviously something that would never happen at home unless you were in the emergency room. Because of this, patient visits often last several hours or the better part of a day. One of the patients whose labs we had checked today was from Tarangire, and she unfortunately left for home prior to us being able to review her results with her so Kitashu will need to call her next week to let her know. At times, if labs are checked very late in the day, a patient may leave and return in the morning for the results, though that wasn’t possible for someone from Tarangire.

We were all heading to Gibb’s Farm tonight for dinner which would be two nights in row for Jill and me. Our safari guide, Joram, had come to pick up Turtle, as we were planning to take it tomorrow to the Serengeti, so we were down to Myrtle for our trip up the mountain to Gibb’s, and there were eight of us going to meet Joe and Sandy, and, with Annie, who was also coming, that made nine. Everyone was dressed up for a nice dinner and Myrtle will see five comfortable but does have two benches facing each other in the back storage area. Referring to them as comfortable would not be accurate, though they are certainly more comfortable than crouching in the back. So once everyone was packed into Myrtle, with the four in the very back (Jenn, Leah, Gina, and Megan – the “youngin’s”), we were on our way back to paradise.

After parking and beginning our walk up to the main building, we ran into the Iraqw choir who had just finished their poolside singing that happens for guests several times a week and were walking back to home. When they saw Annie, who knows most of them, they stopped immediately, lined up, and began an impromptu performance for all of us, all standing across from each other on the little path to reception. Though I’m sure it was mostly because Annie was there, I do believe they were also aware of who we were and were honoring us with their lovely serenade for the work we’re doing at FAME. Everyone was touched by the moment.

I had wanted more than anything at the moment to once again jump in the pool to get the day’s grime off of me. I dropped everyone on the veranda and promptly walked to the pool to drop my things, and then to the bathroom to change into my suit. Though I could hear the rumbles of thunder in the distance, there was nothing overhead to worry about, so I sat floating in the cool water with that magnificent landscape of Karatu in the foreground and the remainder of the vista looking out towards the rolling hills of the Lake Eyasi region in the distance. In that moment, the troubles of the world and our country seemed so very distant to me. All I could feel was serenity.

We were seated at the same table as last night, though extended now to seat 11 of us with Joe and Sandy. Dinner started outside, but as it began to rain, they moved us inside without missing a beat. The heavens opened up, though we hardly had a worry, sitting comfortably and sharing stories about the group. When it was time to head out, we borrowed umbrellas for the walk down to the parking lot, then loaded back into Myrtle, and began our drive home. That most often dry and dusty red clay of Karatu turns to slime with the slightest of moisture and when it rains hard, it becomes so incredibly slippery. Driving downhill, even with the all-time four-wheel drive of the Land Rover, the rear end still loves to slide around without notice so you must take your time and proceed cautiously. Once on the tarmac, everyone began to breathe again, and life was good.