Hannah Rose Onder was born on July 26, 2011. At 7 weeks old we noticed that Hannah started to become jaundice. After blood work and testing on September 27, 2011 it was confirmed that Hannah had a rare liver disease called Biliary Atresia. She had surgery on September 30, 2011 to try to by her time before eventually needing a liver transplant someday. Unfortunately, the preventive surgery was short lived and on April 2, 2012 Hannah was listed for transplant. One month later on May 6th, we got "the call" from the transplant team that they potentially found a match for Hannah, and on May 7th Hannah received her gift of "new" life. We are so happy to report that so far Hannah has recovered wonderfully and is now four years post transplant! She is a fighter and strong little girl.
This diagnosis for Hannah has forever changed our lives. She has taught us so much about life and how to truly live our lives to the fullest. Even though it was a rough road and things are good now, we are still uncertain what the future holds for our little girl. In the midst of accepting our changed lives, once we had her back home, I read and realized how lucky we were to have such a beautiful girl even get her second chance of life, and how others are not as fortunate as us. We had a tough first year of life with Hannah, but so many people have it worse, including the family of the little boy that saved my daughter's life. This family is mourning the loss of their son daily while we are celebrating our daughter's life. I think about them all the time, but know that little boy lives on in Hannah, and we will give her the best life possible to make up for someone else's tragic loss.
With all this said, we have decided to pay it forward. We have had such an amazing support system, and we feel so fortunate to have such wonderful people in our lives. Our support system played a major role in emotionally getting us through this difficult time of our life. Every email, comment, phone call, and card gave us more and more hope for our little girl. Not to mention the overwhelming and amazing support still continues as it is needed even now after the transplant, as we learn to accept our changed life and new "normal". All I would like is for others to feel this same sense of love and support we have felt over the years. It truly makes the biggest difference when going through such a rough and unpredictable journey. This is why we decided to start Hannah's Helping Ways, Inc.
About Hannah's Helping Ways, Inc.
Every year Hannah's Helping Ways has a trivia night in order to raise money for a particularly special family whose baby or child is suffering from a rare life-threatening or terminal disease and/or is in need of an organ transplant. When dealing with this sort of hardship medical bills pile up quick and everyday life and expenses can become challenging. The organization will hold this event in hopes to raise money to help these families with the unexpected and large financial burden of having a child with such a difficult journey to face. Our hope is to create a sense of love and support from the community for these families in their time of struggle.
Hannah was my main inspiration for starting this organization but also a little girl named Riley who was diagnosed with the same disease as Hannah, and was fighting for her life at the same time. The first event that was held in 2012, we supported and honored this little girl named Riley and her family. Riley is now a beautiful angel that unfortunately lost her fight with Biliary Atresia and gained her angel wings on June 16, 2012. Riley had endured 3 liver transplants to attempt to win her fight against liver disease but her tiny body could not withstand the impact such big surgeries can have on such small children. During Riley's struggles, my daughter Hannah was going through her battle with transplant as well. We were fortunate that Hannah was thriving and recovering from her transplant at the time. While we were celebrating Hannah’s recovery and strength, we couldn’t help but feel a little guilty. As we continued to read updates from Riley’s mother my heart literally broke as I watched them struggle. We are so proud of what my daughter has overcome, but every time I think about what we have been through I think about all the children like Riley. We are so blessed to have Hannah here and thriving, but there still is a little hole in my heart that I don’t know if it will ever be truly healed. Even though we didn’t know this little girl or family, it has forever changed me. I found myself constantly thinking about how I could thank God for keeping my daughter here with me. This is when we decided to pay it forward and start Hannah’s Helping Ways, Inc. We watch these families struggle and see these kids fight so hard to just live another day. I can’t help but want to find a way to offer them some love and support. We know our journey probably hasn’t ended as transplant brings on a whole new life with whole new problems, but we try to begin and end everyday as a blessing as long as Hannah is alive and thriving. Hannah’s Helping Ways has become our way to give back and I truly believe this is what we were called to do.
In the past five years we have been able to offer our love and support to five special families. You can read more about these kids under the "Hannah's Friends" tab. Every family has struggles and hardships, but having a child with a life-threatening illness can be unbearable at times. I found during our struggles with Hannah that having love and support can help you find the hope and faith you need to get through the toughest times. We will never forget the love and support we received from our families and friends during our time of struggle. To watch your child deteriorate before your eyes and wondering if she will be here tomorrow is definitely one of the hardest things I have had to go through in life and as a mother. My experience has opened my eyes to what truly matters because you never know what curve ball might get thrown your way. In the end what truly matters the most is our love and our time, because at the end of the day, it is all that we really have to give that means anything anyway.