We are blessed that our son Momo joined our family through adoption. It was a long road to bring him home that led us to understanding that God’s plans are much more than we can ever imagine. Throughout our 4 year adoption journey to bring Momo home, there was another little boy waiting for a family that we followed named Logan. He was at Momo’s orphanage, so we took his photo along with us when meeting Momo to see if he was still in need of a family, not knowing anything about his status or special needs. The orphanage was large, with over 750 children, so we didn’t expect much in the way of gathering any information while we were there. When it was time to meet Momo, we walked into his preschool classroom where there were two teachers and about 10 children. We spent a couple minutes in the classroom meeting and talking with him, when to our surprise they walked one of the boys in his class over to us. We instantly recognized him. Logan, who unbeknown to us, was not only in the same classroom with Momo, but they were best friends! We were immediately drawn to Logan, and began planning while in China to bring him home once we were settled in at home with Momo. Momo was diagnosed with a non-progressive myopathy, but we did gather some information on Logan’s diagnosis – Duchenne. At that time, we had no idea what Duchenne was, but it didn’t matter to us. What we knew was that he was in an orphanage with no family to love and care for him, we had met him, held his hand and he had hugged, kissed, and clung to our son like his life depended on it before we left that preschool room. Our hearts were shattered for this precious boy. Once home, we did a basic search so we would be prepared to give Logan the best possible care once home. What we didn’t expect was that this research would lead us to discover that Momo displayed all the signs of Duchenne. We took him into the doctor and she noticed the signs as well and ordered the ck and genetic testing. We then waited a couple months for the genetic results to confirm. During this wait, we learned that Logan had been matched with another family. It was heartbreaking, yet exciting, to get this information. We didn’t understand it at the time, and really struggled as to why this was happening. As we were processing the loss of being able to bring Logan home, we received the diagnosis of Duchenne for Momo. We were devastated, as this was not the life we had envisioned for him. We had accepted it for Logan, but were not prepared for it with Momo. We took time to grieve this information, and prayed for understanding. What we know now is that God used Logan in our lives to prepare our hearts for Momo’s diagnosis. After our initial grieving, the doors were opened through a Cure Duchenne event we attended for Momo to participate in a clinical trial. This trial had us travel across the country, a complete blessing, as it led us right to the town where Logan now lives with his family! The boys were able to stay connected and visit for over 4 years at almost every clinical trial visit! Seeing them reconnect in their homes with supportive family surrounding them was the biggest blessing! They have a bond and connection with not only their interwoven story, but the battle of Duchenne that they will face together – now with the love and support of a family surrounding each of them!
Recovering Ambulation After Lower Extremity Fracture in Duchenne
PepGen Presents Data from its Duchenne Muscular Dystrophy Program at World Muscle Society Congress
Dyne Therapeutics Presents Preclinical Data from its Duchenne Muscular Dystrophy Programs Targeting Exons 51 and 53 at World Muscle Society 2022 Congress
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