Below you will find the stories of the two families who benefited this week. Take a moment to read and please keep them in your thoughts and prayers as they continue on their special journeys.
God Bless!
Karen Thernka and Kjell Framnes
JOSEPH SEAVERSON
Joseph Seaverson has been diagnosed with a rare and terminal seizure disorder. Additionally, Joseph is starting to go blind. He has surpassed his Dr.’s expectations in terms of his life span thus far. He is currently 2 ½ years old. His family has struggled financially for years. The staff at Easter Seals pitched in last year and got a plane ticket for his mom to take him to her home country so that his grandparents could see him for the first time before he passes away. Apparently dad just lost his job, so the financial troubles that the family has experienced will be getting even worse. Joseph has extensive medical expenses due to his condition, so any help at all whether clothing, toys, groceries, financial is greatly appreciated by this family.
PAUL GOODWIN
Paul was born on March 25, 2008, however, he began demanding attention well before that. Paul was diagnosed with hydrothorax, plural effusions or fluid build-up in his chest cavity inside the womb. There was so much fluid that it began causing heart failure. The doctors went in immediately with a very long needle through his mother’s abdomen, into his chest and removed the fluid. This only helped Paul for a few days, so the doctors entered his tiny, unborn body once again, this time to place a shunt in between his ribs to serve as a sort of drainage tube for the rest of the pregnancy. The shunt worked like a charm and Paul was born full term with Down syndrome. After his birth he remained in the NICU for two months. He had a severe heart defect which greatly affected his energy level and left him too tired even to eat. A gastronomy tube was finally placed to help with the feeding issues and he came home, not as a new born but as a two month old infant. At four months of age Paul was big enough and strong enough to have open heart surgery. His energy level instantly increased and he began rolling over a week after the surgery. Not long after that Paul caught RSV, a nasty respiratory virus that took over his lungs, caused pneumonia, and almost claimed his life. After a month in the PICU on the ventilator, Paul was in and out of the hospital for the next four months battling both strains of flu, Steven-Johnsons (a severe allergic reaction to antibiotics), and dehydration. The most amazing part of his story is not that he experienced all of this by the age of one, nor is it that he survived so many life threatening ordeals. The most amazing thing about Paul is his smile. No matter how many doctors he meets or how many times he gets poked with needles or how many therapy sessions he endures each week, he greets everyone he meets with a huge smile and instantly captures their hearts. Paul has been such a blessing to our family and has no bigger fan than his two year old sister. He has taught us patience, faith, unconditional love, and the true meaning of strength. We are only beginning to understand the great power of the extra chromosome and look forward to the wonderful things it will bring to our family.
2 comments:
I met Paul and his family atop Mt. Rose as part of Karen's, why is she running a 100 mile marthon, cheerleader team. I can atest to Paul having a super sweet smile that warms your heart. Paul, you and your family are rockstars!!! Big Hugs!!
Paul is a cutie, for sure! And his big sis was equally adorable yelling and cheering for Daddy as he finished that mammoth event. This whole family is just incredible and wonderful....and I spent all of about 1 hour with them to get that impression.
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