Life With My Angel

I have been very blessed with great medical insurance to help with Eden's medical needs. However, not everything she needs is covered by medical insurance, and the things not covered are also very expensive.
T-shirta have been designed to raise funds for Eden, while also raising awareness of MLD.
A fund raising blog has been set up for her at princessedenb.blogspot.com.

Please feel free to share the link on your blogs, or facebook, or twitter.

Thank you for your support of my girl!!!!

This post is written by another adoptive mom, Mary Beth Picker. She lives in the same area as Eden and I, and goes to church with my cousin. Her two Ethiopian babies are just about the same age as Eden. Her family has had the opportunity to fund raise for and visit a school in Ethiopia. They are now trying to help expand the school so more students will be served.




Thank you so much Beth for allowing me to post on your blog about a subject that is so important to me.

Over three years ago, my husband and I began our journey to adopt our son from Ethiopia. And since that time, God has been filling our hearts with an overwhelming love and passion for the people of Ethiopia. We returned a year after our first adoption to bring our daughter home. After arriving home with her, we knew we had to do more.

We have been so blessed to team up with other adoptive families around the U.S. and with Lifesong for Orphans. Lifesong is doing some amazing work through a small nursery school that they support in Adami Tulu, Ethioipa. You can read more about Adami Tulu here.

Last year, we, with five other families, raised over $40,000 to build a new building, restroom facility, and gate at the Adami Tulu school. In August, we got to return to Ethiopia to see the new building. We had an amazing trip, and have absolutely fallen in love with Adami Tulu. You can read more about our trip here and here. The school is changing the lives of so many vulnerable children in the area by offering them a wonderful education and two nutritious meals a day.

We've returned home with the knowledge that we have so much more to do in Adami Tulu. So we've agreed to continue our work with Lifesong by raising funds for another school building on the Adami Tulu campus. This will enable the school to expand to include 1st and 2nd grade. More details will be coming soon, but we're anxious to get a jump start on fundraising. We know that this project will cost at least $50,000. But, for these sweet faces, we'll do anything!



We are very excited to announce our first fundraiser for our next phase of the Adami Tulu project: another Aspen Giveaway!



Our Aunt and Uncle have, once again, generously donated toward our fundraising efforts. Only this time they've offered us not one but FIVE stays at the Hyatt Grand Aspen.

We are so very blessed that Hunter's Hope was able to let us use this wheelchair until hers comes in! It helps her sit up high and see everything! Now, we just have to find a different car b/c we can't get it into mine!

Krabbe and MLD are both caused by lack of an enzyme. Bone marrow transplants have been successful in stopping the progression of Krabbe and MLD, and there are also new therapies for delivering the enzyme to children with MLD, but they are only successful if they are done BEFORE ANY SYMPTOMS of the disease appear. Which means, the only children eligible for treatment are those who have had a sibling die from the disease, or who are lucky enough to live in a state with newborn screening for the disease.

Newborn screening varies from state to state. If a baby is born today with Krabbes in New York, he or she will have the option to have a bone marrow transplant, and instead of dying before his/her 2nd birthday, will most likely walk into kindergarten in a classroom for typically developing children. If that same baby is born in Arkansas instead, he or she will go home, and the parents will be told in a few months that their baby has a horrible disease, and they will have to watch him or her suffer and most likely die by the age of 14 months. It's not fair.

The incidence of these diseases individually is 1 in 100,000, but the incidence of lysosomal storage disease is 1 in 5,000. They aren't seen passed down in families, you don't even know you are a carrier until you have an affected child. In some cases, you may have several healthy children, and then a child who is affected, as there is only a 25% chance of passing it to your children if both parents are carriers.

With Eden, there is nothing we could have done differently. She had symptoms from the day I met her, and a bone marrow transplant would have killed her. But I know now that any other children God blesses me with in the future need to be tested for these diseases at birth, or however old they are when they are placed in my arms. While the infantile forms of these diseases are the worst and most urgent for immediate treatment, there are juvenile and even adult forms that don't show up until later in life. They are slower progressing, but still bad news.

Here are two sites with more information on newborn screening:

http://www.evanoskyfoundation.org/7083/index.html

www.huntershope.org

And here's a little more info on lysosomal storage diseases:

http://en.wikipedia.org/wiki/Lysosomal_storage_disease

Yep! She's been in my custody for one year today!

Last year at this time, she clung to me and wouldn't let anyone else hold her. She cried if she heard her Nana talking! She shook her head no if anyone tried to take her from me. She was mine from the second we laid eyes on each other!

Today, her favorite place to be is still with me. But even though she is sick, there is a light in her eyes that wasn't there before. She knows she is loved. It's amazing the difference in a person when they know they are loved!

Eden stayed with friends for a few hours yesterday so that I could go to professional development. She cried when I left her, but not for long, and did great while she was there. Then I came back. As soon as she heard my voice, her lip went out. I held her and she cried and cried. Big tears. Lip out. It was so sad! As soon as she would calm down, I would talk to her, and she would start again! It broke my heart!

We have been together constantly since January. I rarely put her down. I am of the opinion that holding a baby all the time isn't going to spoil it, even if the baby is perfectly healthy. But since I haven't left her, she has forgotten that I come back for her. And since she has been abandoned several times in her short life, me leaving her and never coming back is a very real possibility in her mind.

I start work in a month. The first few weeks will probably be very long while she gets used to being away from me all day again. I'm so not looking forward to it!

Before Christmas holiday, a friend let me borrow her video camera. I'm so very thankful, because I was able to record Eden's cute voice. These were both taken not long before her super long hospital stay. She had started using more words with her signs, and was learning what animals say in Spanish. Such a smart baby girl! And such an adorable voice!