Rhyan Ashley Pope

Our Story

On May 15th 2003, Our Daughter Rhyan, now 11 years old, was diagnosed with a life threatening, urea cycle disorder known as OTC. This inborn error of metabolism is an amino acid disorder can cause very serious health issues. For now the disorder is uncurable without a liver transplant. Which we are thankful at this point she does not need. It will only be needed if her liver continues to be compromised, but so far it has recovered from the stresses of the disease. We are praying that there will soon be a cure through the use of gene therapy. OTC is hereditary, I myself was also diagnosed along with our youngest daughter Aubrey, but so far Rhyan's severity of the disease is much worse. Rhyan struggles daily to remain healthy. With proper medical treatment prognosis is good. But the consequences of a metabolic decomposition could be huge, brain damage, coma or death. Rhyan can have these decompositions for various reasons, like being tired, dehydrated, any type of infection, viral , bacterial, even a simple ear infection make make her very sick. Her diet is crucial, she has to have at least 1200 calories a day with 20 grams of protien. If she has too much protien her body can't metabolize it and she is in danger, or too little her body will break itself down looking for it. Rhyan is fed through a Mickey G-tube. Which is a tube that goes directly to her stomach and she has a button that we can open and connect a tube and feed her. She does not take in enough calories and the proper nutrients. She also takes her meds through her "tubie". Rhyan has also had a Nissan Fundoplication surgery to stop her chronic vomiting. She is on at least 12 pills of Buphenyl a day, and Carnitor, and L-citrulline. Vitamin K, to help her liver clot her blood. She is one tough cookie. She gets meds in her tubie at least 3 times a day, plus specialized formula and medical food. Without the tubie Rhyan would be hospitalized at least every two weeks. All that we do is just to manage the disease it is not a cure. We try really hard to keep her ammonia levels down and her liver as healthy as possible. Rhyan is at risk of Brain damage and or death if her ammonias get too high or her liver is too stressed. We can only control what we can , God knows the rest. It is a constant roller coaster ride. Everyday is different according to her needs. To learn more about OTC, you can click on the links provided below. Also several of the amino acid disorders can also be detected now at birth through the Expanded Newborn Screening program. To keep track on how we are all doing you can read our daily journals. Rhyan has been doing great metabolically. We haven't been admitted in over 6 years for her condition. Unfortunately, May 2011 we have been admitted 3 times, for other complications.


November 2010 - Removal of G-tube :)
May 2011 - Diagnosed with a Chiari Malformation it was treated with Diamox which made her acidodic. 7 days in the hospital.
May 25 Re-admitted for retching: Her Fundo surgery slipped leaving her with a herniated stomach and chronic retching.
>Normal Lab Results:
Ammonia 11-35
BUN 5-25
AST 15-60
ALT 5-45









The Make a Wish Foundation is an awesome organization that gives kids with life threatening diseases a wish. Some kids like Rhyan may Choose a trip, others may want to meet their favorite sports star etc... the bottom line is that Make a Wish makes that happen. Through our journey I have met and made friends with many children who qualify for a "Wish". Trust me, this is not a criteria you ever want your child to meet. But my goal, is that every child that deserves a Wish, gets to have their Wish come true. Will you help us make sure that every child that suffers from a life threatening illness gets a Wish? These kiddos have been put through enough stuff in such a few short years, they deserve a break, they deserve hope, they deserve a Wish. Please click on the MAke a Wish Link below to learn how you can make a Child's Wish come true. All donations stay local and go to local "Wish" kids. Also , Please forward our website on to help raise awareness for Metabolic Diseases and for Childrens Hospital of Central California. If you get a moment please sign the gusetbook, we love to see who has come to check in on us!! God Bless!!!









Rhyan's Make A Wish Trip March 2007








Rhyan's song 2006 Radiothon for Childrens Hospital Central California


BROKEN by Lindsey Haun

Wake up to a Sunny Day
Not a cloud up in the sky
And then it starts to rain
My defenses hit the ground
And they shatter all around
So open and exposed
But I found strenght in the struggle
Face to face with my troubles

When you're broken
In a Million little pieces
And your tryin'
But you can't hold on any more
Every tear falls down for a reason
Don't you stop believin' in your self
When you're broken

Little girl don't be so blue
I know what you're going through
Don't let it beat you up
Hittin' walls ang gettin' scars
Only makes you who you are
Only makes you who you are
No matter how much your heart is aching
There is beauty in the breaking
Yeah

When you're broken
In a Million little pieces
And your tryin'
But you can't hold on any more
Every tear falls down for a reason
Don't you stop believin' in your self
When you're broken

Better days are gonna find you once again
Every piece will find it's place
When you're broken
When you're broken

When you're broken
In a Million little pieces
And your tryin'
But you can't hold on any more
Every tear falls down for a reason
Don't you stop believin' in your self
When you're broken
Oh When you're broken
When you're broken
When you're broken

I Found this poem on another website and it spoke to me....

God Sent to Me an Angel
Written by Paul Dammann

God sent to me an angel,
it had a broken wing.
I bent my head and wondered
"How could God do such a thing?"

When I asked the Father
why He sent this child to me,
the answer was forthcoming,
He said "Listen and you'll see."

"My children are all precious,
and none is like the rest.
Each one to me is special,
and the least is as the best.

I send each one from Heaven
and I place it in the care
of those who know my mercy,
those with love to spare.

Sometimes I take them back again.
Sometimes I let them stay.
No matter what may happen
I am never far away.

So if you find an angel
and you don't know what to do,
remember, I am with you,
love is all I ask of you."

Journal

Friday, December 23, 2011 10:57 PM CST

Hey Friends,
Well so much to report since my last entry. Summer and Fall have come and gone and I can't believe it is almost Christmas. Rhyan did very well over the summer, but I was sick most of the summer and into the fall. In September, Rhy started having stomach and headache problems. These episodes would last for a week, where Rhy would feel very lethargic and nauseated. Then she would be ok for a week or two and then it would return. We ended up in the hospital twice in October and this lasted up until November. The doctors thought that she was having stomach migraines and put her on meds which made her even more lethargic. It came to the point in October that the doctors said that she needed to be out of school. So Rhy was on Home Hospital instruction for a while but my health was not great either. So finally in November I decided to take a leave of absence to get myself healthy again and to get Rhyan healthy and feeling more confident about school. It has only been a few short weeks since I have been off of work and Rhyan has been doing so much better. I am just starting to feel better too. For now I am going to Home School Rhyan. Our goal is for Rhy to get back in school for 6th grade, but we will have to wait and see. Sometimes what we plan on is not what God has planned for us and everything changes.(Boy, do I know this) The good news is that Rhyan's therapy is horseback riding and we were able to purchase land so that we can be close to the horses. I think I enjoy the horses more than the girls do. We haven't moved up to the property yet but that is in the works. So there is a lot of change going on, but I am so thankful to have a great family. I miss my classroom, but know that these years that I have with my girls are so limited. Rhyan is struggling and we need to do everything we can to make her feel successful. Our school has been awesome both to Rhyan and myself and we are using the district's Home School Program until Rhy is ready to go back. I am praying that I get back to feeling 100�o that I can take the best care of my family as possible, and I am praying that we are successful at Homeschooling. Teaching my own child is much harder then teaching other children:) But Rhyan's work ethic is amazing and she is eager to learn, I really couldn't ask for her to be a better student. I am so proud of her and Aubrey both. I am excited to see what the New Year brings:) I am praying that it has nothing to do with Doctors visits and hospital stays. I didn't get Christmas cards out this year, but I will get something out soon, with our change of address and pictures.
God has been so good to our family, with every struggle, there have been blessings that we would have never known. A special thanks to all of my friends and family who have been there for us over these past 6-7 months, your support and friendship mean so much!!! Thank You God for all of our blessings. We are looking forward to a Happy and Healthy 2012!! Merry Christmas Everyone!!!! And Happy New Year!!

Read Journal History

Hospital Information:

Patient Room: AT HOME!!!!!!!!

Childrens Hospital Central California
9300 Valley Childrens Place
Madera , CA 93638-8762
559-353-3000

Links:

E-mail Author: theresapopebr@gmail.com

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