Ready to Accept Donations!

Aiden is ready to begin accepting donations!

Everyone has been asking about how to do this (THANK YOU ALL SO MUCH!) and here it is!!!

1. Go to http://www.ntafund.org/
2. Click on "find a patient"
3. Enter "aiden" into the first name section and his page should come up! If not, just select his name and you can enter his page that way! You may also enter "magnuson" into the last name section if you still can't find him but it looks like he is the only "Aiden" right now so he should be super easy to locate!
4. You can make your donations securely through this site and be sure that your money is going where you intend it to go!
5. All donations are tax deductible!
6. Thank yourself - you have just made a difference in a little boy's life and you are helping him on his quest for a brighter future!!!


ALSO! AIDEN IS NOW ON FACEBOOK! Join his Cause!!!!! - http://www.causes.com/causes/473533

Thank you all for everything you are doing. You are helping to move things in our lives and in our hearts. It means so much to us knowing that you all are loving, supporting and praying for us either from down the street or from a distance! We love you all!

LOVE ALWAYS,

John, Katie and Aiden!


"Rejoice in the LORD always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious in anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus!"
Philippians 4:4-7

Hooray!

Everything is happening... quickly! We just received our acceptance letter from Beike. NOW, we are trying to get all the paper work together and figure out the logistics of this adventure.

The NTAF sent us our packet in the mail, so now all we have to do is fill out the financial information and the estimated cost of the trip and make the initial donation and everything will begin! The woman I spoke with thinks she can have the site up and running by the end of the day tomorrow or by Monday at the very least!

There are a few things I have to do as far as getting some medical records together. They are going to need copies of MRIs and such in order to better assess Aiden's brain and optic nerves. We are really getting excited, but I am certainly a planned so there is some stress involved with this whole process. I need to figure out exactly what we will need to bring for the trip and figure out if we need a passport, visa, both, etc. and really start getting that stuff together.

Aiden is happy as ever - it seems like he doesn't have the slightest clue that all of this is happening around him! He is just jumping, singing and playing all day - which I am VERY grateful for because it gives me a constant reminder of why we are doing all of this. I try not to get stressed and remember that there is a plan already laid out for us, we just have to follow it!

Hopefully, by next week we will really be able to start RAISING funds. The best way we can do this is to raise awareness in our community and continue to spread the word about his upcoming website. I have a feeling I am going to have to be one the news, which I'm not particularly thrilled about, but I will endure for the sake of the cause. I'm already a nervous wreck, I can only imagine how over the top that will put me! You guys better not laugh.

Anyway, we have two therapies today and are working on trying to re-regulate our routine due to the recent chaos around here. Just wanted to share the good news! Please continue praying for guidance on this issue! We really appreciate all that you guys are doing and have done for us. We cannot wait to officially get started!

"And these words, which I am commanding you today, shall be on your heart; and you shall teach them diligently to your sons and shall talk of them when you sit in your house and when you walk by the way and when you lie down and when you rise up. And you shall bind them as a sign on your hand and they shall be as frontals on your forehead. And you shall write them on the doorposts of your house and on your gates."
Deuteronomy 6:6-9

Easter Weekend

We had a wonderful Easter! We got to hang out with Grammy and Aunt Lucille at the beach and got to visit John's family Saturday evening. We had a wonderful time! Aiden dresses to impress in his cool Easter outfit! So cute!

Today we are SUPER excited because our prayers are being answered and everything is really falling into place! We have been researching stem cell treatments in China and talking to a few families across the U.S. who have already been there and back! (Some have already gone TWICE!) It was SO encouraging to hear their stories and gain some insight as to what it would be like for us to try it out.

Basically, there is a "corporation" called Beike Biotech (http://www.beikebiotech.com/) that has been performing these treatments for quite a few years now with marvelous results. Actually, you can youtube "optic nerve hypoplasia" and find TONS of videos of children before and after they left for China! The results are astounding!

Anyway, they are NOT performing experiments, they ARE offering a proven treatment. This does not mean that it is 100% effective and it is not a CURE, but it seems to work for a majority of patients. Also, many people hear the word "stem cell" and are instantly freaked out by the idea of ethical and moral restrictions governing the practice. For this reason, please allow me to clarify. Where we are headed, the doctors/nurses will not be using "embryonic" stem cells - they will SOLELY use stem cells from banked umbilical cord blood (donated by healthy babies when they are first born) or adult stem cells. YAY!!!

Because Aiden is so young, they will likely only administer the treatments via I.V. - although, many older children and adults recieve the treatments by lumbar puncture.

WHY WAS TODAY SO GREAT!?

*We filled out our Beike application and sent it in! We are waiting to hear back which should only take up to 3 days or so, AND we will probably have to retrieve some more "official" documentation from his cast of many specialists (Thank you DUKE!) before they can make a more educated decision about accepting Aiden for treatment.

*ALSO!!! We contacted a really nice lady from an organization called NTAF (National Transplant Assistance Fund) and came to the conclusion that we will be working with them to raise donations!! This may not seem like a huge deal, but actually, legally raising money and accepting donations for us to go to China has been the hardest part! Thankfully, that is JUST what they're there for. They are going to help up through everything - from printing flyers to wiring money to Hong Kong. I am SO thankful to have found them because I was really starting to get discouraged by the lack of resources available for individuals trying to fund-raise. SO, once we are accepted for treatment, we will begin fund-raising immediately!!

MANY THANK YOUS to my WONDERFUL friend Dionne who is helping me build a website for Aiden's Vision. She is going to be sure to link his page with this blog as well as NTAF's site for Aiden so that people can donate, get tax write-offs AND be sure that their money is going where it belongs! Thank you thank you thank youuuu for all your help and hard work! Clearly I am not a technologically advanced person as I am just now learning what it even means to blog! :)

This treatment will cost us anywhere from $35,000 to $50,000! Thankfully, we are surrounded by AMAZING friends and family members who have been NOTHING but completely understanding and supportive! We are praying that through hard work, dedication, the amazing power of technology, and simply word of mouth, Aiden will make it to China in no time! As always, your prayers and support are SO appreciated. We are hoping that once the new site gets launched and the donation page is up and running, we can start sending it out to everyone we know and hopefully the forwarding will be unstoppable!

Aiden is such an AMAZING baby and deserves the best the world has to offer! Thank you fromt he bottom of our hearts for being a part of helping to change his world and his LIFE.

"I thank God for you—the God I serve with a clear conscience, just as my ancestors did. Night and day I constantly remember you in my prayers. "

- 2 Timothy 1:3

Introducing... AIDEN!

Aiden Cooper Magnuson was born on January 23rd, 2009. Weighing in at a whopping 9 pounds and 6 ounces, Aiden had a rough time from the start. He was born 10 days past his due date and I was induced with him because I was failing my "non-stress" test. Aiden came out blue and barely breathing, but it didn't take long to get him going! We stayed in the NIC-U for 6 days due to very low blood sugar counts and the threat of a possible infection. He has an IV everywhere; his hand, foot, and then even in his head 3 separate places! Aiden pulled through those first days of life and came home perfectly healthy.

As he began to get bigger, I was alarmed at how he was still eating every few hours. Friends told me it was time for him to be sleeping through the night, but that did not seem like it was going to fly with Aiden. Finally, we took him to our doctor again who discovered an extremely low blood sugar level again! No wonder he was so hungry! Also, about that same time his eyes were still not able to focus on and track objects. We decided to take the next step and see a few specialists at Duke University, a few hours from our home.

His pediatric eye doctor ran quite a few tests before informing us that Aiden had Optic Nerve Hypoplasia - ONH. We didn't really know what that meant for us or our family, but we knew that we would do everything in our power to help him make the most of every single day! As for his sight, we were told that he would probably have little to no sight and that there was currently NO TREATMENT or cure and essentially nothing we could do. From there, we were sent to an Endocrinologist who reviewed an MRI that had been done on Aiden. She discovered some pituitary deficiencies/abnormalities as well as a thickening in his brain. She immediately checked his hormone levels and we decided to begin hormone therapy right away. He began taking a growth hormone (A SHOT every single day!!), a thyroid hormone, and a cortisol supplement. We were informed that cortisol is what your body makes when you get sick, and Aiden didn't produce ANY. Therefore, if Aiden gets sick he has to get a double or triple dose of this one to help his body properly fight off the sickness!

Now, Aiden sees 4 therapists on a weekly and bi-weekly basis; physical, play, visual, and occupational therapists. He seems to be developing wonderfully although at 14 months, is still working on trying to walk and crawl. He is really getting there though! We are SO proud of him and he truly has the ability to put a smile on ANYONE's face. He laughs ALL the time. He is the most perfectly amazing child I have ever seen. God has truly blessed our family and our lives by giving us this bundle of joy.

"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."

-Jeremiah 29:11