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Keyara Walls wants one thing that no one can give her for Christmas — a kidney.
“She doesn’t know she can’t have a kidney for Christmas,” her mother, Leslie Walls, whispered. “She believes Santa will bring her one. She said, ‘Mommy, don’t worry, I asked Santa for a new kidney and he’ll give me one for Christmas.’ She doesn’t understand.”
The Shawnee Early Childhood Center kindergartner, who will turn 6 on Dec. 17, wrote a Santa letter on a writing assignment form her teacher, Laura Foster, sent home.
Keyara has suffered from nephrotic syndrome since she was about 1 year old and won’t be able to have another biopsy until January. The biopsy will show whether she is beginning to get better, if the disease is the same or if her condition is worsening.
Since the disease primarily affects children 2 to 6 years old, there is hope that Keyara will outgrow it, her mother said. And if the tests show improvement, it would be much less invasive to continue treating her with medicines than to have her undergo a transplant.
However, her mother said she was on a list for a kidney when she was first diagnosed but her condition improved enough that she was removed from it.
The disease she has is especially rare in Keyara’s case, as it is one that is typically found in boys and is uncommon even then, her father, Nick Walls, said.
“Boys usually have it a year and grow out of it, but it’s rare for them to have it, too,” he said. “When boys do have it, if they relapse, which is really rare, it’s usually in their teens. We still don’t know about her. I just wish for her she’d grow out of it.”
Keyara is what is referred to as a “frequent relapser,” her parents said. Her longest remission so far lasted only six months.
“She was on a high dose of steroids and we’re weaning her down and this is usually the time where she relapses,” her mom said. “But sometime by the middle of next month, we should know how she’s going to go.”
It was about four and a half years ago that Keyara’s family moved from Shawnee to a house in the country in Wanette and her journey with kidney disease began. The family wondered, at first, if that move was what made her sick.
“The first day, we thought something bit her,” her mom said. “Then we thought maybe she was allergic, had an allergy, to something. She began to swell and by the third day, she was so swollen she couldn’t see.”
Her parents took her to Unity Health Center, where a routine urine test was taken. That test showed a high level of protein being excreted from her kidneys and Keyara was rushed by ambulance to Children’s Hospital in Oklahoma City.
During that first visit, which lasted several days, Keyara was given a special friend, whom she calls “Daddy Mo” or “Monkey Mo.” The stuffed animal – which is about her size – has attended every doctor’s visit and hospital stay since, filling in when Daddy is at work and can’t be there, and taking IVs right along with Keyara.
“When I get a stick, he gets it, too,” she said.
Keyara doesn’t mind that Monkey Mo is beginning to need some repairs – his seams are ripping a bit and he’s lost some stuffing – because she knows he won’t make fun of her when her face swells.
“That’s why she wants a kidney, so she won’t be picked on,” her mother said.
Her father said it isn’t just the children who laugh or call her names when she shows signs of a relapse, which begins with her “tummy swelling first, then her face, until she almost doesn’t have a neck anymore.”
“It’s adults too,” he said. “We’ll be in the store and they’ll see her and say something like, ‘she is a fatty, her parents need to put her on a diet.’ And she’s heard them say it too.”
The children and adults don’t know about the recurring swelling that makes her have to take eight prescriptions per day or the port in her chest that supplies medicines when she needs intravenous dosing. They don’t know she hates to wear her “stretchy clothes” and that she prefers to wear her jeans and boots.
And they don’t know that she can’t run and play with her classmates or her five siblings because she begins to turn purple and starts to feel faint when she is too active. But that’s why she put a couple additional items on her Christmas letter to Santa this year.
“She wants a Nintendo DS so when everyone else is outside, she can at least play with it so she won’t get bored,” her mom said. “She misses recesses and activities at school because she can’t run and play like the other kids. She has a blood pressure problem too.”
Keyara said her favorite color is red; she likes turkey sandwiches, which she can have as part of her low-salt diet; she knows what she wants to be when she grows up — a doctor to help kids who are sick like her; and she has a favorite song — “The climb,” by Hannah Montana.
Her mother said she has had to trust doctors, and now those at school, with her daughter and has experienced tremendous worry at times when doing so. The doctors also worried about Keyara last year, with the H1N1 flu, and pulled her from school.
“Her first day of kindergarten, I cried and cried,” her mother said. “I was so scared leaving her there, not knowing if they would know what to do if she got sick. But she’s done pretty good this year.”
Still that wasn’t the worst time Leslie Walls remembers having to leave her daughter with someone else.
“We almost lost her once,” she said. “She started swelling and we took her to the hospital in Shawnee. They didn’t even take her through triage. They just rushed her back and I couldn’t see her for about an hour. Then they came up and said they were medi-flighting her to the city. I’m scared of heights, so I couldn’t ride with her and everyone else was sick with the flu.”
She said once she made it to the hospital in Oklahoma City, she still couldn’t see her daughter for several hours.
“I couldn’t go back there for three hours; she was in kidney failure,” she said. “I knew the doctors were taking care of her but being a mother, that wasn’t good enough. I wanted to be there.”
That was the only time Keyara had to have dialysis, her parents said. She was in the hospital about three weeks.
Keyara’s parents said they don’t want people to look at their daughter as a charity case and they were reluctant to share her story at first because they feel they have all they need with their children, family and friends. But there was a reason they agreed to tell her story.
“We just want people to know, don’t ever take life for granted,” her mother said. “It can be taken from you before you know it.”
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Keyara Walls wants one thing that no one can give her for Christmas — a kidney.
“She doesn’t know she can’t have a kidney for Christmas,” her mother, Leslie Walls, whispered. “She believes Santa will bring her one. She said, ‘Mommy, don’t worry, I asked Santa for a new kidney and he’ll give me one for Christmas.’ She doesn’t understand.”
The Shawnee Early Childhood Center kindergartner, who will turn 6 on Dec. 17, wrote a Santa letter on a writing assignment form her teacher, Laura Foster, sent home.
Keyara has suffered from nephrotic syndrome since she was about 1 year old and won’t be able to have another biopsy until January. The biopsy will show whether she is beginning to get better, if the disease is the same or if her condition is worsening.
Since the disease primarily affects children 2 to 6 years old, there is hope that Keyara will outgrow it, her mother said. And if the tests show improvement, it would be much less invasive to continue treating her with medicines than to have her undergo a transplant.
However, her mother said she was on a list for a kidney when she was first diagnosed but her condition improved enough that she was removed from it.
The disease she has is especially rare in Keyara’s case, as it is one that is typically found in boys and is uncommon even then, her father, Nick Walls, said.
“Boys usually have it a year and grow out of it, but it’s rare for them to have it, too,” he said. “When boys do have it, if they relapse, which is really rare, it’s usually in their teens. We still don’t know about her. I just wish for her she’d grow out of it.”
Keyara is what is referred to as a “frequent relapser,” her parents said. Her longest remission so far lasted only six months.
“She was on a high dose of steroids and we’re weaning her down and this is usually the time where she relapses,” her mom said. “But sometime by the middle of next month, we should know how she’s going to go.”
It was about four and a half years ago that Keyara’s family moved from Shawnee to a house in the country in Wanette and her journey with kidney disease began. The family wondered, at first, if that move was what made her sick.
“The first day, we thought something bit her,” her mom said. “Then we thought maybe she was allergic, had an allergy, to something. She began to swell and by the third day, she was so swollen she couldn’t see.”
Her parents took her to Unity Health Center, where a routine urine test was taken. That test showed a high level of protein being excreted from her kidneys and Keyara was rushed by ambulance to Children’s Hospital in Oklahoma City.
During that first visit, which lasted several days, Keyara was given a special friend, whom she calls “Daddy Mo” or “Monkey Mo.” The stuffed animal – which is about her size – has attended every doctor’s visit and hospital stay since, filling in when Daddy is at work and can’t be there, and taking IVs right along with Keyara.
“When I get a stick, he gets it, too,” she said.
Keyara doesn’t mind that Monkey Mo is beginning to need some repairs – his seams are ripping a bit and he’s lost some stuffing – because she knows he won’t make fun of her when her face swells.
“That’s why she wants a kidney, so she won’t be picked on,” her mother said.
Her father said it isn’t just the children who laugh or call her names when she shows signs of a relapse, which begins with her “tummy swelling first, then her face, until she almost doesn’t have a neck anymore.”
“It’s adults too,” he said. “We’ll be in the store and they’ll see her and say something like, ‘she is a fatty, her parents need to put her on a diet.’ And she’s heard them say it too.”
The children and adults don’t know about the recurring swelling that makes her have to take eight prescriptions per day or the port in her chest that supplies medicines when she needs intravenous dosing. They don’t know she hates to wear her “stretchy clothes” and that she prefers to wear her jeans and boots.
And they don’t know that she can’t run and play with her classmates or her five siblings because she begins to turn purple and starts to feel faint when she is too active. But that’s why she put a couple additional items on her Christmas letter to Santa this year.
“She wants a Nintendo DS so when everyone else is outside, she can at least play with it so she won’t get bored,” her mom said. “She misses recesses and activities at school because she can’t run and play like the other kids. She has a blood pressure problem too.”
Keyara said her favorite color is red; she likes turkey sandwiches, which she can have as part of her low-salt diet; she knows what she wants to be when she grows up — a doctor to help kids who are sick like her; and she has a favorite song — “The climb,” by Hannah Montana.
Her mother said she has had to trust doctors, and now those at school, with her daughter and has experienced tremendous worry at times when doing so. The doctors also worried about Keyara last year, with the H1N1 flu, and pulled her from school.
“Her first day of kindergarten, I cried and cried,” her mother said. “I was so scared leaving her there, not knowing if they would know what to do if she got sick. But she’s done pretty good this year.”
Still that wasn’t the worst time Leslie Walls remembers having to leave her daughter with someone else.
“We almost lost her once,” she said. “She started swelling and we took her to the hospital in Shawnee. They didn’t even take her through triage. They just rushed her back and I couldn’t see her for about an hour. Then they came up and said they were medi-flighting her to the city. I’m scared of heights, so I couldn’t ride with her and everyone else was sick with the flu.”
She said once she made it to the hospital in Oklahoma City, she still couldn’t see her daughter for several hours.
“I couldn’t go back there for three hours; she was in kidney failure,” she said. “I knew the doctors were taking care of her but being a mother, that wasn’t good enough. I wanted to be there.”
That was the only time Keyara had to have dialysis, her parents said. She was in the hospital about three weeks.
Keyara’s parents said they don’t want people to look at their daughter as a charity case and they were reluctant to share her story at first because they feel they have all they need with their children, family and friends. But there was a reason they agreed to tell her story.
“We just want people to know, don’t ever take life for granted,” her mother said. “It can be taken from you before you know it.”
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