Showing posts with label Patients' Corner. Show all posts
Showing posts with label Patients' Corner. Show all posts

January 5, 2011

5-year-old's got a whole world in his hands

Elijah Richards, who's being treated for hepatitis C, holds the globe sent to him by supporters from all over the world whom his family came to know through the Internet

Published: 12:00 AM, Sun Dec 19, 2010
Kim Hasty

LAURINBURG - The Richards family is ready for Christmas. The tree and nearly every square foot of visible living space are decorated with some sort of Christmas cheer.

Cheer, in fact, is the general order of the day in this house located a bit off the beaten path of the town's main thoroughfare. The only thing more prevalent than Christmas decorations is the laughter. And in the middle of it all earlier this week was the pint-size source of much of the prevailing sense of happiness.

Sitting cross-legged, with encouragement from not one, but four, older brothers, 5-year-old Elijah was given permission to carefully unwrap the first Christmas present of the season. A little early to start opening presents, perhaps, but this one held an undeniably special significance.

The gift had come from friends. Friends from all over the world. Australia and New Zealand. Italy, France and England. From various parts of the United States, too.

Elijah opened the cushioned box. Inside, of all things, was a globe. A globe small enough that a 5-year-old could lift it out of its box and hold it carefully in his small hands. And one day come to understand its implications.

"It's wonderful they did this for him,'' said his mother, Lana.

The globe, which spins on solar power, sits on a crystal-like pedestal inscribed with these words: "Elijah Richards. Hep C Hero. Christmas 2010.''

Hero is a heavy mantle to hang on a 5-year-old, but this 5-year-old wears it well. A wiggle worm sometimes. A hero all the time.

"They call hepatitis C a dragon,'' Lana Richards said. "But Elijah's gonna beat it because he's a dragon slayer.''

Lana and Shawn Richards knew there was a chance Elijah would be born with hepatitis C because his birth mother had the disease. Hepatitis C is caused by a blood-borne virus that slowly attacks the liver over time. There is no vaccine to prevent the disease and no certain cure. Once a child is infected, the disease has historically lasted a lifetime. In the United States, about 240,000 children have been exposed to the virus.

Undaunted, the Richardses, already the parents of five children, went through with the adoption and accepted Elijah's diagnosis when it came, without flinching.

What they couldn't accept was the fact that the conventional medical practice has historically been to not treat children for hepatitis C until they begin showing symptoms of the disease, which often doesn't happen until they are adults in the prime of life. Part of the reason is that few drugs have been available for treatment in children.

Lana Richards got busy educating herself. She found two websites in particular that offered her the most comfort and the most information - hepcnomads.co.uk and hepatitisckids.freeforums.org. She began online conversations and formed friendships with people who could relate to her struggle to help her son.

Almost exactly a year ago, Elijah began treatment. The Richardses say he is the youngest person undergoing treatment for hepatitis C in North Carolina. While Elijah's treatment originated at UNC Hospitals in Chapel Hill, most of the hands-on efforts come from his mother. Elijah takes antiviral medicines twice a day, and Lana Richards gives her son a once-a-week injection of a chemotherapy medication. Sometimes, she's up all night with him when he's feeling sick.

It is never easy for her, injecting this cheerful little boy with a medication with side effects that sometimes make him very ill.

"I always hesitate,'' she said, "but he always makes me feel better.''

The treatment has taken a toll on Elijah. His blood platelet count is low, and he is battling severe anemia. But if the treatment works - and they won't know that until about six months after his treatment is complete - then Elijah will be considered free of the disease.

That's where the gift of the globe comes in. More than 20 people, most of whom the Richards family knows only from the Internet, banded together and purchased the globe to send to him. A gesture of hope and kindness from all over the world. Elijah can look at those spinning continents and know the locations of all the people who are thinking of him and hoping for the best for him.

They wanted Elijah to know that, all over the world, people are pulling for and praying for this little pioneer. This little hero.

Community news editor Kim Hasty can be reached at hastyk@fayobserver.com or 486-3591.

Source

The Little Dragon Slayer ... Takara's Story


The Little Dragon Slayer

Takara's Story

Takara was daignosed with hepatitis C geno type 1b in June of 2009. Our world as we know it stopped. With the news of Takara having Hep C came the devestating knowledge of how she contracted Hep c, through me, her mother vertical transmission. One may ask why would you have a child knowing you had Hep C? The answer simple. I had just found out I had this virus prior to finding out I was pregnant.

We were informed there was a 3% chance Takara would be infected with the virus. The doctors advised to have her tested at about 2 years of age. We tried several times to have her blood drawn and it wasn't until she was 4 years old before we had a non problematic blood draw which confirmed our worst fear. Takara had Hep C.

Takara's pediatrician reffered us to a infectious disease specialist, who told us he could not treat her. That children are not treated until they are at least 18 years of age. That there was not an approved treatment for children. This answer simply was not acceptable. I began educating myself, searching the internet, making many phone calls and leaving many messages. weeks turned into months. I prayed, searched and prayed some more. I was led to a Pediatric Liver Specialist at UCLA. Dr Susan McDiarmid, 300 miles away and she treated children.

Before Takara could start treatment she needed a liver biopsy. This was to determin the condition of her liver and aid in dosage strength of the medication. Takara started treatment on Feb. 5 2010. It has been almost a year that she has been on treatment. Takara's treatment is over seen by Dr McDiarmid at UCLA, however her medication must be administerd at home. I give her Rebetol (anti viral medication) twice daily and a weekly injection of Pegasys (chemotherapy medication). Takara must also get regular blood draws to monitor her counts. This medicine combination can make, and has made Takara very sick many times. There have been many nights I have been up with her just trying to comfort her. It is not easy to give my little princess medicine, I know will make her sick. Being on treatment for almost a year now has taken a toll on her. Takara has been battling loss of appetite, weight loss, rage, and insomnia to name just a few.

On top of all this Takara tries to carry on her daily routine. She attends all day kindergarten, which she looks forward to and enjoys greatly- most days.

I have met families from all over the world online in my search for knowledge, on how to battle and cope with these dangerous side effects. Families that have supported Takara in her fight against Hep C, some by purchasing from her website I set up for her, and others by praying and sharing valuable information.

It is for this reason, on Takara's last day of treatment in Feb., we are going to present Takara with a Mova Globe. We will show to Takara, all the locations of the families who have been, and still are supporting and praying for her.

Even though Takara's treatment will officially end this Feb. It will be a new begining for her. They call Hep C the "Dragon" and even as her fight with the dragon comes to an end, it will be another 6 months before we will know if treatment was a success for our little Dragon Slayer.

Jenell Chow