"News and Highlights"
Keith's Stories: About Rafael
Camp Sunshine volunteer Brittany - for Rafael...
A little bit about Rafael
Rafael Z. Martins lived a beautiful life. He was born in Maryland in 28th December 1999 and fully lived his life till October 20th 2009 in Greenbelt, Maryland. Rafael was born with a rare disease called VATER syndrome and had health issues his whole life though, most of the time no one could tell it because he was just the happiest kid on Earth. As part of his health issues Rafael had been on daily dialysis treatments since 2 years old and had a right prosthetic leg. Nevertheless Rafa was unstoppable and always wanted to push things forward till his last day. Despite of dialysis and all other issues, Rafa always wanted to participate in everything and fortunately had the opportunity to travel to many States in the US and a few places around the world. He just had to do it!!!
Rafael has been through Greenbelt Nursery School and Greenbelt Elementary School where he met most of his friends. Rafael’s Race is an event that reflects the way Rafael lived his life and serves as a fundraiser to help kids at Greenbelt Elementary School to participate in field trips. I hope this little snippet of Rafael’s life will serve as an inspiration to you as his life has served as an inspiration for our family and friends.
If you don’t want to read much, you can browse through the pictures and through the Halloween story. Just click on the links bellow and navigate through the text and picture highlights.
This is not a complete story. There is much more to say and many people to acknowledge that are not mentioned here. This is work in progress and will be updated as we can…
Rafa is born
In January 1999, Dr. Yoram Kaufman invited me to come to the US for post doctoral work in his group at NASA Goddard. Marines and I happily decided to take this exciting opportunity and move to the US for one or two years maximum. A few months later, still during negotiations, we have a big surprise: Marines is pregnant.
At that point I had to tell Yoram and I am pretty sure that my post-doc is over: “…who would take a young post-doc with a pregnant wife?” Only later I learned that Yoram was about to have a highly productive group with many babies to come (from other young members of the group). We were happily accepted in the group and the upcoming baby was taken as “…great news – excellent!”.
The miracles from Rafael’s life started very early, even before he was born. Marines’ pregnancy had some early hiccups with bed rest and some medication early-on but that was nothing compared to what was still to come. When she got better I went with her to a few ultrasounds and everything seemed fine. Our trip was materializing for early December and Rafael was supposed to be born in the end of February. In the last appointment I insist with the physician: “Look. We don’t have to travel to the US now. If there is any sign that something is wrong with the pregnancy we will stay here. We can always travel later in another opportunity. There is no essential reason to go now…” and the Doctor insisted enthusiastically: “There is absolutely nothing wrong. You definitively should go now!!!”
Before traveling to the US we make this trip to Sao Paulo’s coast and while walking on the sand with Marines I touched her belly and had the first sensation that something was not right. “Her belly felt a bit softer than it should be”, as if I had any idea on how it really should feel like. And, anyway, the doctor really insisted that everything was perfectly OK. We traveled anyway and everything went perfectly well during the trip. We temporally rented a gorgeous furnished apartment in North Bethesda for two weeks till we could find our own. Between Bethesda and Old Greenbelt we quickly decide that we wanted to live in Old Greenbelt.
Exactly 7 days after we arrive to the US, we entered this apartment complex in Old Greenbelt and asked if they had a two bedroom apartment available for immediate occupancy. The attendant replies: “No way; we have a long waiting list and it takes months to get one.” We turned around and as we approached the door to leave she called us back: “Wait!!! I actually have something for you. Someone just moved out in a family emergency and unless someone occupies that apartment right away, they will have to keep paying the rent. You can have it in a week”. The timing was exactly right for us. We signed for it and went home. We had no idea that the timing was really providential for us. Earlier that same day, out of the blue, I had asked the secretaries at work if they knew a good maternity in the area. They pointed me to the Holy Cross Hospital, which that same day we saw on the way driving back home. That same evening, Marines did not feel well and luckily (since I asked) I knew exactly where to take her. It did not take long for the resident Physician to tell us that something was very wrong with the baby. This was December 8th, and except for a couple days home, Marines would expend most of the time in the hospital till Rafael was born on December 28th.
Later we understood that it was essential for Rafael to be born in the US and, in particular, in the DC region. He would have had no chance otherwise. Everything happened just the way it was supposed to. Everything went perfectly well despite of all the issues. Rafael was born weighing 3 pounds and 11 ounces and was transferred a few hours later to Children’s Hospital in Washington DC. The same day the Children’s Doctors gave me an amazingly accurate diagnosis of Rafael’s issues that held for his whole life: “Rafael has a rare syndrome with a few known cases worldwide, with different associations of problems depending on the case. We still don’t know the full extent of his problems but his kidneys are fully compromised and may never work. He is too small for dialysis and he may not survive but, with your permission we will do for him everything we can.” Different Doctors kept coming and telling me many details about Rafael’s situation that later proved amazingly accurate. We now know many families with ill kids that took a few years to come to the right diagnosis and we got it the day he was born. There was no question that we were at the right place and that if Rafael had any chance to survive, this was it. Rafael had to be born in the US, and in this particular location. And, as always, from the beginning, the support from friends and from the Greenbelt Community was overwhelming and essential to us.
The hardest issue at that point was to have Marines at Holy Cross and Rafa at Children’s Hospital several miles away from each other for the first few days. Rafael stayed for 45 days in the NICU before we brought a whole NICU home with us, but that is another story…