Anika and Sophia just turned 9! Since day they were born they have always been happy and cheerful and honestly the light of our lives.
From the day they were born we knew something was not quite “right”: they spent a 25 days in the NICU, they had feeding issues, they did not learn to walk until they were 2.5 years old, they had countless ear infections, they never learned to speak verbally, and they have seizures.
At the age of almost 3 years old they were diagnosed with Angelman Syndrome; a rare neuro-genetic disorder. Angelman Syndrome (AS) affects 1 in 20,000 children. It causes severe developmental delays, seizures and difficulty with speech and balance. One of the unique characteristics of the disorder is an unusually happy demeanor with lots of laughter and smiles.
To this date, we have spent countless hours in Dr’s offices, hospitals and in therapy trying to help them cope with living with their syndrome. As a family we feel blessed to be surrounded by an amazing team of Dr.’s, teachers and therapists that work every day for progress of the twins. We are truly blessed with an amazing and very large therapeutic support team.
If you met Anika and Sophia you would instantly fall in love with them. They love to play, rid bikes, swim, surf You-Tube and just hang out with friends and family. One thing about Anika and Sophia is that they have a way to light up a room with their unconditional love, smiles, laughter, and giggles. We have many hard days in the Bjorklund house but the smiles on Anika & Sophia’s faces make all of the hard work to make progress worth it.
We are raising money to support a cure for AS. We have a huge amount of hope about the future and a possible cure. The scientific research is very promising and there are now several pharma companies working with AS scientists on the next step, a clinical trial. AS is one of the first single gene syndrome’s to move in this direction. We are overwhelmed with the possibilities and the amazing work that researchers doing on AS. Many have dedicated their careers to finding a career to for this syndrome.
As you know, Eric and I have been on a path that is not frequently traveled. We face many obstacles everyday but we feel so blessed to have Anika and Sophia as our daughters. They have taught us more about life, love, sacrifice, persistence, and determination than one might ever imagine. We have met amazing people in the AS community and we know we have the love and support of so many others.
As these amazing scientists continue to work on a cure and we continue to work with our medical, educational, and therapeutic team, please consider supporting Anika and Sophia in their fundraising efforts.