My Inspiring Networking Weekend: Part 3--Megan Adediran
I told you that we were arranged in order of hero to practical saint. The more I learned about Megan and her story, the more in awe of her I was. Let me set the scene of our meeting:
I had briefly met Megan last year at this conference, but I hadn't really gotten to know much about her. She was pretty cool, but I hadn't really thought much about it. Then, this year, we were doing this activity at the director's conference. It was a two-circles-ice-breaker type thing. Our circle rotated, and I ended up with her. They told us to tell each other a time when we had to change our camp direction mid-stream because of things out of our control. She told me to go first. Here I was talking about that awful time when we had to completely change our entire schedule because we got rained out and the power was out, and it got insanely cold. Oh, woah is me. Then, she tells me. Well, her camp is in Nigeria. They had to change from a summer camp to a Christmas camp because civil unrest in August wasn't conducive to having a summer camp. And suddenly, my rained out day just sounded silly. But something more amazing about that story is that when I was telling her about my rain-frustrations, she didn't laugh at me. She listened and nodded and laughed with me and said,"Oh, that sounds hard."
Let me tell you all about Megan. The story of Megan starts many, many years ago in Nigeria. No one in her family had ever been diagnosed with hemophilia, but her grandmother had lost nine sons (count 'em, nine) to post-circumcision bleeding. Her mother had lost several the exact same way. When Megan had her first son, he was diagnosed with hemophilia. The doctor basically said, "Your son has hemophilia. Have a nice day." Megan and her husband stopped the doctor and said, "Wait. So?" The doctor's response? "Well, he'll be dead by three." On a side note, this is not good bedside manner, friends.
Megan wasn't okay with that answer. "So I just go home and start counting days?" Her husband asked, "In today's world, there's absolutely nothing you can do?"
The doctor wanted to get rid of them, but had to be honest. "Well, there's this one drug, but you can't get it in Nigeria." Megan told him, "I am a mother. You tell me what it's called, and believe me, I will find it." The doctor writes down DDAVP. This is a drug that stimulates production of factor VIII, so it does have success with mild type A hemophiliacs, but it wouldn't work for a severe, or a type B. So, it wasn't even the right drug for Megan's son, a severe type A. However, Megan held on to that piece of paper like it was her life. Eventually, they track down some DDAVP in Australia. But, it doesn't work. At all.
Distraught, Megan starts trying to find a new answer. She eventually contacts the South African Hemophilia Foundation. They respond to her questions with, "If you son bleeds to the extent you describe, then DDAVP will not work. You need clotting factor." The South African Hemophilia Foundation gets her in contact with the World Hemophilia Federation, who find her donated factor. A lot of it. They teach her how to infuse it--over the phone. Can you imagine that? And it is like a miracle to her.
And here's where it changes from Admirable Mama Bear to Absolute Saint. She goes to the hospital in her town, comes in there and says, "Do you have any hemophiliacs in here?" The doctors say, "Well, one, but there's not really anything we can do, so he's mostly here for pain relief." Megan tells them, "Take me to this child and I will fix him." She gives the child factor and the doctors ask her, "Where did you get that? You shouldn't have that!" Ignoring their indignation, she tells them, "I want a list of every parent that you told to go home and count days." She got the list and she contacted each and every one of them, telling them that she had a treatment.
Megan quit her job and now travels all over Nigeria. She scares the living day-lights out of doctors who turn away patients or say that hemophilia is a white disease. She coordinates getting factor to anyone who needs it. She spends all day, every day, finding a way for these hemophiliacs to live.
Eventually, she ran into that first doctor again. She looked him, and he looked her and said, "Do I know you?" She reminded him of who she was and then said, "Don't you ever tell someone their child will die of hemophilia by age three again. That son is now fourteen. And has a younger hemophiliac brother, too."
Her struggles continue, as the government stops all factor at the border and seizing it, telling her that she can have it back for inordinate amounts of money. As she sees children die of brain bleeds because a doctor doesn't believe in factor. All of the children of her camp don't just call her Megan, they call her Mama.
In Young Women's, they always say, "Be the type of woman that when you get out of bed in the morning, Satan says, 'Oh, crap. She's up.'" I think that describes Megan Adediran. And it is my privilege to call her friend.
To contribute to Megan's cause, you can donate through Save One Life, or visit their website. On their website, you can see a petition that you can sign. When the government changes, they are hoping to have a petition to their minister of health as one of the first things on his desk saying that there needs to be some access of care in their country and for him to consider their plight.
I had briefly met Megan last year at this conference, but I hadn't really gotten to know much about her. She was pretty cool, but I hadn't really thought much about it. Then, this year, we were doing this activity at the director's conference. It was a two-circles-ice-breaker type thing. Our circle rotated, and I ended up with her. They told us to tell each other a time when we had to change our camp direction mid-stream because of things out of our control. She told me to go first. Here I was talking about that awful time when we had to completely change our entire schedule because we got rained out and the power was out, and it got insanely cold. Oh, woah is me. Then, she tells me. Well, her camp is in Nigeria. They had to change from a summer camp to a Christmas camp because civil unrest in August wasn't conducive to having a summer camp. And suddenly, my rained out day just sounded silly. But something more amazing about that story is that when I was telling her about my rain-frustrations, she didn't laugh at me. She listened and nodded and laughed with me and said,"Oh, that sounds hard."
Let me tell you all about Megan. The story of Megan starts many, many years ago in Nigeria. No one in her family had ever been diagnosed with hemophilia, but her grandmother had lost nine sons (count 'em, nine) to post-circumcision bleeding. Her mother had lost several the exact same way. When Megan had her first son, he was diagnosed with hemophilia. The doctor basically said, "Your son has hemophilia. Have a nice day." Megan and her husband stopped the doctor and said, "Wait. So?" The doctor's response? "Well, he'll be dead by three." On a side note, this is not good bedside manner, friends.
Megan wasn't okay with that answer. "So I just go home and start counting days?" Her husband asked, "In today's world, there's absolutely nothing you can do?"
The doctor wanted to get rid of them, but had to be honest. "Well, there's this one drug, but you can't get it in Nigeria." Megan told him, "I am a mother. You tell me what it's called, and believe me, I will find it." The doctor writes down DDAVP. This is a drug that stimulates production of factor VIII, so it does have success with mild type A hemophiliacs, but it wouldn't work for a severe, or a type B. So, it wasn't even the right drug for Megan's son, a severe type A. However, Megan held on to that piece of paper like it was her life. Eventually, they track down some DDAVP in Australia. But, it doesn't work. At all.
Distraught, Megan starts trying to find a new answer. She eventually contacts the South African Hemophilia Foundation. They respond to her questions with, "If you son bleeds to the extent you describe, then DDAVP will not work. You need clotting factor." The South African Hemophilia Foundation gets her in contact with the World Hemophilia Federation, who find her donated factor. A lot of it. They teach her how to infuse it--over the phone. Can you imagine that? And it is like a miracle to her.
And here's where it changes from Admirable Mama Bear to Absolute Saint. She goes to the hospital in her town, comes in there and says, "Do you have any hemophiliacs in here?" The doctors say, "Well, one, but there's not really anything we can do, so he's mostly here for pain relief." Megan tells them, "Take me to this child and I will fix him." She gives the child factor and the doctors ask her, "Where did you get that? You shouldn't have that!" Ignoring their indignation, she tells them, "I want a list of every parent that you told to go home and count days." She got the list and she contacted each and every one of them, telling them that she had a treatment.
Megan quit her job and now travels all over Nigeria. She scares the living day-lights out of doctors who turn away patients or say that hemophilia is a white disease. She coordinates getting factor to anyone who needs it. She spends all day, every day, finding a way for these hemophiliacs to live.
Eventually, she ran into that first doctor again. She looked him, and he looked her and said, "Do I know you?" She reminded him of who she was and then said, "Don't you ever tell someone their child will die of hemophilia by age three again. That son is now fourteen. And has a younger hemophiliac brother, too."
Her struggles continue, as the government stops all factor at the border and seizing it, telling her that she can have it back for inordinate amounts of money. As she sees children die of brain bleeds because a doctor doesn't believe in factor. All of the children of her camp don't just call her Megan, they call her Mama.
In Young Women's, they always say, "Be the type of woman that when you get out of bed in the morning, Satan says, 'Oh, crap. She's up.'" I think that describes Megan Adediran. And it is my privilege to call her friend.
To contribute to Megan's cause, you can donate through Save One Life, or visit their website. On their website, you can see a petition that you can sign. When the government changes, they are hoping to have a petition to their minister of health as one of the first things on his desk saying that there needs to be some access of care in their country and for him to consider their plight.
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