Sunday, March 3, 2013

Hoping, Praying for a Cure!

The Sand Mountain reporter did an article on Kamryn a few weeks ago. Click on the following link to check it out!

http://www.sandmountainreporter.com/news/local/article_e0c9a90e-7a17-11e2-b6e6-0019bb2963f4.html?TNNoMobile

Wednesday, February 27, 2013

Hope.. It's in our Genes


I can't believe that it has been a year since our first Rare Disease Day. It seems like yesterday. It has been quite an eventful year.. and sometimes I wonder how we make it through some of the things that we do. Then, I am reminded, it is because my Hope is In You, Lord!




We have this hope as an anchor for the soul, firm and secure. It enters the inner sanctuary behind the curtain. 
- Hebrews 6:19




This verse has become one of my favorites. I feel like I can relate and understand it now, more than I ever have. Hope is much like an anchor. Just like an anchor helps protect and keep a ship secure, hope does the same for the soul. When a storm beats against a ship, the anchor helps keep it in place. When winds blow and waves crash, the anchor helps keep the ship secure and safe. When the anchor is in place, and as long as it keeps it’s hold, the ship is safe. We too have an anchor for the storms of our own lives - hope. If we keep our hope in place, our minds and hearts will not wear in the storms of life. With hope as our anchor, we can have peace. We can have faith that the anchor will hold, and we can remain strong and steady throughout the storm. Hope is the anchor that holds us steady, no matter what in life is tossing and turning us.

So many times, I feel like the storms of my life are taking over. The hope that I cling to is something that helps hold me in place. It gives me something to hold on to. Frankly, I think that it is one of the only things keeping me sane.




"For I know the plans I have for you," Declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you." 
- Jeremiah 29: 11-12


This verse is another one of my favorites. God knows the plans that he has for us, even when we do not. He has plans that were made just for us. With Kamryn, her future is uncertain. I do not know the plans that he has for her. We trust in him and believe that he has a plan far better than ours. He has plans to PROSPER her and not to HARM her. He will give her a hope and a future. This verse is perfect! Below are a few other verses that I LOVE! 



Therefore, we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So, we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal. 
- 2 Corinthians 4: 16-18




Through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God.  Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance;  perseverance, character; and character, hope.  And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.  You see, at just the right time, when we were still powerless, Christ died for the ungodly.  Very rarely will anyone die for a righteous man, though for a good man someone might possibly dare to die. 
- Romans 5: 2-7
   




Wednesday, February 13, 2013

Save the Date


The 2nd Annual Kure 4 Kamryn event will be held on May 4th this year. Save the date! We would love to see you there! If you know of anyone who would be interested in becoming a vendor, please let them know about our event.

Proceeds from this event will go to Kamryn's medical fund for medical and travel expenses. We will also donate a portion of these proceeds to the Ara Parseghian Foundation and the National Niemann-Pick Disease Foundation.


Sunday, February 10, 2013

Wear that you Care




While rare diseases themselves are rare, rare diseases as a whole are not so rare at all. The statistics are unbelievable... Approximately 1 in 10 people are affected by a rare disease!! There are more than 6,000 different types of rare diseases - Niemann Pick Type C is one of those. Alzheimers is also one of these. 95% of rare diseases do not have an approved treatment. 

Help Raise Awareness for Rare Diseases by wearing jeans on Rare Disease Day!

 Genes & Jeans.. a natural fit :  Pairs – jeans come in pairs - genes come in 23 pairs.






About the Global Genes Project
www.globalgenes.org

The Global Genes Project is one of the leading rare and genetic disease patient advocacy organizations in the world. The non-profit organization is led by Team R.A.R.E. and promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. What began as a grassroots movement in 2009 with a few rare disease parent advocates and foundations has grown to over 500 global organizations.
RARE is Everywhere

1 in 10 people worldwide suffer from rare and genetic conditions
Rare and genetic diseases affect 1 in 10 Americans, 30 million people in the United States, and 300 million people globally.  Over 7,000 distinct rare diseases exist and approximately 80 percent are caused by faulty genes.  The National Institutes of Health estimates that 50% of people affected by rare diseases are children, making rare diseases one of the most deadly and debilitating for children worldwide.
Unity Creates Hope™
Hope_Genes_Logo_Rare_Disease_Day
Blue Denim Genes Ribbon™ and Hope Tagline
While individual rare diseases have small patient populations, collectively the rare disease community is larger than the AIDS and Cancer communities combined.  Despite its size, the community lacks of a unified voice, as only 15% of  rare diseases have organizations or foundations providing support or driving research.
It is estimated that 95% of all rare diseases do not have a single FDA approved drug treatment, and there are currently less than 400 treatments approved by the FDA  for the nearly 7000 rare diseases which have been identified. According to estimates from the NIH, it will take 10,000 years at the current rate of FDA drug approvals to find therapies for all people suffering from rare and genetic diseases.
Support the Global Genes movement today by getting involved.
Leadership
The Global Genes Project’s mission is centered on increasing rare disease awareness, public and physician education, building community through social media and supporting research initiatives to find treatments and cures for rare and genetic diseases. Many of our leaders support children, family or friends with rare and genetic diseases. They understand the fight on a deep personal level and keep in mind the needs of our community at all times.
Global Genes and our leaders are committed to ensuring that our programs support our worldwide mission: Raising Rare disease Awareness, Research and Education (R.A.R.E.), Unifying and empowering a vibrant rare disease community to take action, Funding innovative programs to help organizations fast track “in-a-lifetime” rare and disease research and therapies


To view the list of rare diseases, visit this link: http://globalgenes.org/rarelist/








  • 30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population
  • In the United States, a condition is considered “rare” it affects fewer than 200,000 persons combined in a particular rare disease group. International definitions on rare diseases vary. For example in the UK, a disease is considered rare if it affects fewer than 50,000 citizens per disease
  • 80% of rare diseases are genetic in origin, and thus are present throughout a person’s life, even if symptoms do not immediately appear.
  • Approximately 50% of the people affected by rare diseases are children.
  • 30% of children with rare disease will not live to see their 5th birthday.
  • Rare diseases are responsible for 35% of deaths in the first year of life.



  • But those who hope in the LORD 
    will renew their strength. 
    They will soar on wings like eagles; 
    they will run and not grow weary, 
    they will walk and not be faint . 
    - Isaiah 40:31




    For I know the plans I have for you, declares the LORD, plans to prosper you not to harm you, plans to give you a future and a hope.- Jeremiah 29: 11


    For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees? But if we hope for what we do not see, we wait for it with patience. - Romans 8: 24-25



    Rejoice in hope, be patient in tribulation, be constant in prayer. - Romans 12:12
    For whatever was written in former days was written for our instruction, that through endurance and through the encouragement of the Scriptures we might have hope. - Romans 15:4


      May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope. - Romans 15:13


    So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. - 2 Corinthians 4:16-18


     Now faith is the assurance of things hoped for, the conviction of things not seen. - Hebrews 11:1









    Saturday, November 17, 2012

    The Lord is my Shepherd

    I read the perfect devotion today. I have been doing a lot of praying about Kamryn's treatment plan and what we should do. It seems like I am being pulled in a hundred different directions by different people. Ultimately, God is the only one who can truly guide us. I know that everyone is trying to help, but sometimes all that it does is make me feel more lost, alone, and confused. So, I pray. I beg for guidance and a sign. I feel like today's devotion was definitely for me. Gods voice is the only one that truly matters. I know everyone is only trying to help, and it's okay to try. I have just got to stop worrying about all of the advice and about what people think. If I follow God's path, whom shall I fear?

    From today's devotion of Jesus Calling

    There is no condemnation for those who are in Me. The law of the Spirit of Life has set you free from the law of sin and death. Not many Christians know how to live in this radical freedom, which is their birthright. I died to set you free; live freely in Me!

    To walk along the path of freedom, you must keep your mind firmly fixed on Me. Many voices proclaim: “This is the way for you to go,” but only My voice tells you the true way. If you follow the way of the world with all its glitter and glamour, you will descend deeper and deeper into an abyss. Christian voices also can lead you astray: “Do this!” “Don’t do that!” “Pray this way!” “Don’t pray that way!” If you listen to all those voices, you will become increasingly confused.

    Be content to be a simple sheep, listening for My voice and following Me. I will lead you into restful green pastures and guide you along paths of righteousness.

    Therefore, there is now no condemnation for those who are in Christ Jesus, because through Christ Jesus the law of the Spirit of life set me free from the law of sin and death.
    —Romans 8:1–2

    Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, “This is the way; walk in it.”
    —Isaiah 30:21

    “My sheep listen to my voice; I know them, and they follow me.”
    —John 10:27

    The Lord is my shepherd, I shall not be in want. He makes me lie down in green pastures, he leads me beside quiet waters, he restores my soul. He guides me in paths of righteousness for his name’s sake.
    —Psalm 23:1–3

    Friday, October 26, 2012

    Pneumonia

    When your child has pneumonia, any parent is going to worry. When your child has a disease or a disorder, it can be very serious. With NPC, Pneumonia is brought on quickly and can be extremely serious. 

    Kamryn developed a small cold at the beginning of the week. She had a little bit of a runny nose and cough. It was not severe at all. We didn't take her to the doctor, because it did not seem to be a bad cold. Wednesday night, her cough became severe. She also had very shallow, rapid breathing. I took her to the doctor on Thursday thinking she has Bronchitis. The doctor thought she appeared to have a cold. When he listened to her breathing, he realized how severe it was. So, he ordered a chest X-ray. She has Pneumonia in both lungs, as well as an ear infection. They gave her a breathing treatment and a shot. He told us to come back first thing this morning. Her breathing seems a little better, so he just ordered an antibiotic for her. We were instructed to send her to Children's if things get worse. We have also been referred to a lung specialist there. This will help us see how the NPC is affecting her lungs. 

    I am very worried right now. Please pray for Kamryn!


    Friday, October 19, 2012

    Niemann Pick Awareness

    October is Niemann Pick Awareness Month!!!

    We have been working hard to raise awareness in our community since the moment that we got an official diagnosis- almost a year ago. It is so hard to believe that this Halloween will be an exact year from when she was tested for NPC. It is so crazy to look back on it and to see how far we have grown since then. I still remember the feeling of grief and desperation that I felt a year ago. Matter of fact, sometimes that feeling comes back. I can honestly say that it is the worst feeling that I have ever felt. Luckily, we have a great support group and an awesome God who helps ease the pain.

    I finally finished a Video for Kamryn and NPC Awareness. My original plan was to make a video that explains the disease and struggle that families face. However, I could not bring myself to focus solely on that. In fact, it took me forever because it was the hardest video to make. I included scriptures and wrote it with Kamryn as the narrator. I think I may have spent more time crying and praying than actually working on the video. If you know me well, then you know how hard it is for me to talk about the negative side and the emotional burden that I face daily. I bottle it up, and I only share my deepest and darkest feelings with a select number of people. I guess that is why it was so hard to make this video.



    We are still trying to stay completely positive - though it is extremely hard. I often feel like people expect me to stay strong 100% of the time, and I find that impossible. I do a lot of praying for strength. I would be lying if I said that I don't fear what the future may hold. Even with my faith, it is still hard not to be afraid.

    Monday, October 15, 2012

    Guidance from Above

    Have you ever prayed for a sign from God? An answer to a question? A plea for guidance? I know I have.. Many times! Since the day of our diagnosis, I have been praying and begging God for a treatment/cure. After battling doctors and fighting for approval, we now have Zaveska in our hands. We have had it for almost two months. I have been praying that God would give us peace and would let us know when the right time to start the medicine is. Each time we plan to start it, Kamryn gets sick or gets some sort of virus. We, as well as our doctors, feel that it will be best for Kamryn to be completely well when she starts taking the meds. I feel like God is guiding us in this decision. Maybe Kam keeps getting sick because it is not time yet. I pray that God will continue to guide us on this journey. I can't help but have anxiety about this. I do not want to see my baby in pain!! I know that God has hand on her, and I am believing that she won't have the awful side effects that children usually have. Please keep us and Kam in your prayers. We plan to start the treatments on the 26th. That may change depending on God's guidance and Kamryn's health.

    Sunday, August 19, 2012

    NNPDF Conference 2012

    The 20th Annual National Niemann Pick Disease Foundation Conference was held in Nashville this weekend. Unfortunately, we were not able to make it for the entire conference. However, we were able to make it Saturday for the end of the conference dinner. We were able to spend time with and personally meet a lot of the families that we have talked to by phone and on Facebook. Our mentor, Paula Corbitt, is great! She and her family are from Woodville, Alabama. So, they aren't far from us at all! Paula has two daughters, Haley & Riley. Riley passed away from NPC at 6 1/2 in 2008. Kamryn loves Haley and seemed to have an instant bond with her.

    Below is a picture taken at the dinner last night (Kamryn and Haley are on the left in the picture.)

    A few other pictures from our trip are also included.

    Friday, July 13, 2012

    Almost a Year Old!!










    Where has the time gone? My sweet little Kam-Kam is turning a year old in a week. This has been the most amazing year of my life! I am so blessed to have such a beautiful, loving, and sweet baby to call my own. I have loved her since before I knew her, but I love her more every single day!

    It is so hard to believe how quickly babies grow and progress. Kamryn amazes me daily with new words and behaviors that she  is learning. So, here is an update on Kamryn's life lately.

    She has WILD streak.. she loves to constantly get in to everything. She loves to be on the go and moving. She is outgoing and loves to be around other children. She is a singer and songwriter. She is a drummer. She is a girly-girl. She loves flowers. She loves anything bright and shiny. She is sporty. She loves to be a cheerleader! She loves ball sports. She is a SQUEALER. She loves to clap, high-five, and wave. She loves to say "no", and she loves to shake her head and point her finger while doing it. She loves to feed herself. She loves to walk, and she even seems to try to run. She is a dancer. She loves climbing stairs.. and chairs too. She loves being held and cuddled. She loves to kiss. She loves to hug. She says "Love you".. and I think she means it! :) She loves her family. She loves to be center of attention and to be clapped for.  She is loved. She is one-of-a-kind & we love her for everything that she is! 

    Excuse me while I stroll down memory lane...