Posted: 10 July 2020 at 10:51 UTC
Last Updated: 30 Jan 2024 at 19:10 UTC
Our daughter, Sophia, was born perfectly healthy and lived the first 6 years of her life as a very active, outgoing, adventurous little girl. She loved ballet, running faster than her older brother, and planning parties.
We had no idea that there was a ticking time bomb in her brain that would change
our lives forever.
On November 5, 2017 at 2am, Sophia woke up in the middle of
the night with a terrible headache and in the ER that night we learned of the
Arteriovenous Malformation (AVM) that had ruptured which caused a hemorrhagic
stroke. She later had anischemic stroke as well, which affected the entire right side
of her brain. The next five months was a nightmare as we watched our little girl
spend four weeks in a coma, go through four brain surgeries, endure medication
withdrawal,and wake up as an entirely different child than we’d had before.
Slowly but surely she learned how to breathe on her own, eat, talk and walk again.
Every day was a battle that she had to win and I was so thankful the determined
little girl she’d always been had remained. In time she was happy and healthy despite
all she’d been through,but had lost all function in her left hand, wrist, ankle and toes
and had many mobility,learning, memory and speech disabilities. Almost two years
after her AVM rupture and strokes, my aunt read about a new stroke recovery
treatment in a magazine. She told me about a doctor in Germany,
Nils H. Thoennissen, who was leading the way in this treatment and urged us to look into his clinic.
We have always been open to trying new and ground-breaking treatments and therapies
to give Sophia the best chance at a successful life as we can, so we eagerly went to the
CBC Health website and shortly thereafter spoke with Dr. Thoennissen on the phone
where we had many of our questions answered that very day.
Over the next couple of weeks we had more questions answered thoroughly by email
and also by phone with the liaison call center in Florida. Once the decision was made
to go through with the cord blood treatment, we planned for the trip which would take
place about three months later, in January of 2020.
About once a week we received a phone call from the clinic where they checked in
with us, got our flight information, sent us tips and travel info on the city of Munich,
Germany, etc. Once we arrived at our hotel, we were in contact with the clinic concierge, Daniel, who let us know the itinerary for the week and made plans to meet us the next day at the hotel. The next morning he put us at ease immediately with his near-perfect English and sense of humor as he escorted us to the clinic. That first day we met with Dr. Thoennissen and his staff,which were all so nice and helpful. The clinic is comfortable and modern, with large rooms (and the kids were pleased to find lots of chocolate).
Dr. T got Sophia’s medical history and answered any and all questions we had, including explaining the cord blood infusion process clearly. After her lab work was drawn, we were free to explore the city, which was beautiful despite the winter weather. The second and third days were spent doing the cord blood infusion, which went smoothly.
The doctor did not leave Sophia’s side while her vitals were monitored frequently
and she was kept very comfortable.
In the evenings when we went back to the hotel, Dr. Thoennissen kept in touch with
us via phone, checking in multiple times and making sure all was well. The final
day we went back to the clinic for her last check-in. We were provided with
medical information to give to Sophia’s doctors back home about the treatment
she’d received and planned a virtual check-in for about three months post
infusion. After our week in Munich, Daniel arranged for transportation to
the airport, taking us all the way to the check-in desk, which was so helpful!
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