Save the Date
This week is an extremely busy week for us. Nicole and I have been invited to speak at St Patrick Parnell Catholic School. My sister, Connie, is the Vice Principal at the school. They have selected the Angelman Syndrome Foundation for their charity drive this year. You can read a copy of my speech at the bottom of this blog post.
Not only are we going to speak to the families of St Patrick’s parish, but there are also two important dates coming up this week. February 14th is National Donor Day. Maddie donated five organs to two individuals. Her kidneys went to a 21-year-old female. The other recipient, a 7-year-old boy, received Maddie’s intestines, liver, and spleen. We know how powerful her gifts have been. We would give anything to hug, kiss, and love on our little lady. We are so humbled that Maddie gave this gift to two families. Her lungs went to research. They are even harvesting stem cells from Maddie’s lungs to grow mini lungs. They are able to research the effects of Covid and a myriad of other respiratory issues with our daughter’s donation.
The other big date is February 15th. February 15th is International Angelman Day. If you remember Maddie’s eulogy, I challenged you to all to wear blue on this day. Blue is the color for Angelman Syndrome awareness. If you are posting on social media, please use #remembermaddie. We would love to see you, your family, your coworkers, and your friends continue the fight to find a cure. We appreciate you all, and we love you.
The speech:
Good afternoon. We’re Adam and Nicole Birchmeier. There’s another member of our family that we wish you could meet, but she has gone home to be with our Lord.
Madelynn Joan Birchmeier was born June 3rd 2020 and instantly captivated not only our hearts, but the hearts of so many of our family. Madelynn never met a stranger she didn’t like. She had an ability to draw you in with her beautiful blue eyes and her head full of curls. She loved her aunt, Mrs Leckenby, and her cousins Jillian, Hannah, and Gracynn.
Maddie, as we called her, was so very special. We had no idea just how special she was. 18 months after Maddie was born, she was diagnosed with Angelman Syndrome. We, like so many others, had never heard of this syndrome before. Angelman Syndrome only occurs in 1 in 15,000 births. To put that into perspective, out of the 7.8 billion people on this planet, roughly 500,000 individuals have this syndrome.
When Maddie was diagnosed, Nicole and I were understandably scared, and we felt so alone. Most individuals who have Angelman Syndrome have seizures, they have sleep issues, they are unable to verbally communicate, they have an unsteady gait, some Angelman individuals never walk.
But angels, as we call them, are truly that. They love unconditionally, they find excitement in even the most mundane things, this is why it is sometimes referred to as Happy Baby Syndrome.
When Maddie was diagnosed, Nicole and I spared no expense. Maddie began weekly occupational therapy, physical therapy, and speech therapy. We traveled from Muskegon to Grand Rapids every week, so she got the best care available. However, Angelman Syndrome is so rare, medical professionals have a hard time finding the right treatments. Can you imagine your child being in the emergency room, and the doctor asking you, the parent, what they should do to treat your child?
This is one of the reasons why the Angelman Syndrome Foundation is so important. With the ASF, we found a home. We were no longer alone. We met a community of parents and families from around the country who showed us that this diagnosis is not the end of the world, it is in fact, a brand new, beautiful world.
The ASF has set up specialty clinics around the country with experts whose sole focus is to provide the best care for an individual with Angelman Syndrome. Each year we took Maddie to Children’s Colorado in Denver. The experts there collaborated with our team here in Michigan to give Maddie the best care possible.
Not only does the ASF provide clinical support, they provide family support as well. Some families are not as blessed as Nicole and I. The ASF helps to provide families with equipment, funding, and expert support to ensure their angel gets the best care possible. Just as an example, Maddie’s specialty bed that helped to keep her safe at night, cost $15,000. Maddie had multiple other specialty items, that she needed to get through her day to day. The ASF helps those families that are struggling with the mountains of medical bills stay afloat.
The ASF also connects parents and caregivers. Every two years is a family conference. We attended a family conference in Austin, Texas, the summer of 2022. This was 6 months after Maddie’s diagnosis. We met so many angels and so many families that helped to mentor us through this diagnosis. Some of these families, have become our lifelong friends.
There is cutting edge research that is funded by the ASF. Since we know the cause of Angelman Syndrome, we know this can be cured. This is why some of the top scientists and researchers are fervently working on new methods to tackle this syndrome. These new methods have the ability to be transferred to other disciplines. ASF research is quite literally on the cutting edge of science. Speaking with researchers and clinicians, a cure for Angelman Syndrome will be found within our lifetime. The methods used will be able to help find the cure for other syndromes and diseases like Dup-15, Rhetts Syndrome, and cancer. This research will not save our child’s life, but it might have an impact on someone you love.
In August 2023, our daughter suffered a medical emergency. All of the systems we put in place worked, but it wasn’t enough. God called our daughter home. Our team in Denver collaborated with the team at Helen DeVos Children’s Hospital. Maddie got the best care possible but humans cannot stop the plans of the divine.
Nicole and I were called into a conference room and we were informed that Maddie would not recover. The conversation immediately transitioned to the Gift of Life. I have so much respect for any parent who makes the decision to donate their child’s organs. As a parent, you are told your child will die, and you immediately have to make another gut wrenching decision.
Nicole and I decided that our daughter will once again change the lives of others. Madelynn donated a total of 5 organs to two individuals. One individual, a 21-year-old female, received Maddie’s kidneys. Another individual, a 7-year-old boy, received Maddie’s intestines, liver, and spleen. These two children, who must have been terribly sick, now have a new outlook. Their parents will be able to hug them, kiss them, and watch them grow, all because of our Maddie.
I urge you all to consider donating to the ASF. All throughout Maddie’s life and even in her death, we have relied on the ASF. When Maddie was in the hospital, the CEO of the Angelman Syndrome Foundation dropped everything and drove from Indianapolis to Grand Rapids to be with us. She went home the day after Maddie passed, but then turned around to be with us for Maddie’s funeral. People traveled from throughout the country, to come to Maddie’s funeral. Even her doctor from Denver, flew in the morning of the funeral, and flew out directly after. The love we have been shown by the Angelman Syndrome community has been unbelievable.
So I ask all of you to help those families that still need help. Help us repay the love that has been shown. Help us honor our daughter’s legacy. Thank you so much for having us.
-Written by Adam Birchmeier
