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b'ONCE UPON A GENE - EPISODE 021\\nHealthier Healthcare for All\\nChristie Olson is interviewing me and we\\u2019re firing up a conversation about the healthcare challenges along my journey with Ford in hopes that it shines a light on some of these issues that parents face regularly.\\xa0\\xa0\\nLet\\u2019s talk about how we know each other and how we met.\\nAt our mutual favorite place, Kindering,our local birth to three center, there\\u2019s a program for kids around 16 months old where you can bring them out of the home setting and bring them into a mini preschool setting where the parents come to the class as well. We met because your son, Peter was in the same class as Ford for a few months.\\xa0\\nIntroduce you son, Ford.\\xa0\\nFord is my favorite subject. He\\u2019s the brightest light, so hard-working, so smart and so funny. His laugh is constantly in my head- I hear it all the time. He has this spirit about him that brings you down to Earth, He loves the comfort of his home and his stuff and being with family. He loves weather, being outside and the wind on his face. He\\u2019s really easy going and he just never gives up. He\\u2019s the hardest working person I\\u2019ve ever met.\\xa0\\nTalk about when Ford began receiving outpatient therapies from Kindering.\\nFord was admitted into Seattle Children\\u2019s at about three months old for failure to thrive. When we left after about a week, I think they set things in motion for us. I don\\u2019t recall making those calls, although maybe I did. I think Seattle Children\\u2019s played a huge part in connecting me to Kindering. They set up an evaluation for Ford and I brought him in and theses two therapists did a few different things with Ford. I was really emotional and not really understanding the scope of what was going on with Ford at the time and they were so calm with me and so patient. They confirmed that Ford definitely needed therapy services, that he qualified and that they would contact me. When they contacted me, they also said Ford qualified for home visits, which was the biggest relief. We were set up with speech therapy, physical therapy, occupational therapy and vision therapy. We then found our footing with which ones we needed to focus on more.\\xa0\\nCan you tell me about what Ford\\u2019s diagnosis is?\\nFord was diagnosed with CTNNB1, which is a gene that mutated. It\\u2019s a random occurrence and not something that Casey or I passed down to Ford. That gene specifically is in charge of producing a protein called Catenin beta-1 and has lots of jobs that has to do with cell growth, reproduction, cell adhesion and it affects many parts of Ford\\u2019s body. There\\u2019s cognitive disabilities, motor disabilities and speech disabilities. Ford isn\\u2019t able to sit or walk yet and he\\u2019s non-verbal. It creates a lot of difficulty in getting around and doing daily tasks. Random things also affected include his vision and a sensitivity to the sun. Most of the children diagnosed are really young, so we don\\u2019t have a lot of knowledge about what can happen later. CTNNB1 was found in 2012 and there are fewer than 200 people with the diagnosis so there\\u2019s a ton we don\\u2019t know yet. We\\u2019re growing a lot with the access to genetic testing, so hopefully we can keep learning more and connect it to similar diagnoses.\\nLINKS AND RESOURCES MENTIONED\\nBilly Footwear\\nKindering\\nProloquo2Go\\nTUNE INTO THE ONCE UPON A GENE PODCAST\\nSpotify\\n Apple Podcasts\\nStitcher\\n Overcast\\nCONNECT WITH EFFIE PARKS\\nWebsite\\nTwitter\\n Instagram'