Meet Will and Sasha
To read their individual stories, please check out our blog!
These 2 brave Warriors of Hope are fighting Primary Immunodeficiency Disease.
Both children receive weekly infusions of Immunoglobulin Replacement Therapy (Sub-Q Ig). These treatments consist of infusing immunoglobulins (derived from blood product pooled from thousands of blood donors) via 2 needle sites over the course of 2-3 hours weekly.
Despite being attached to a pump for 2 hours every Monday - they understand that their 'Magic Medicine" keeps them from getting sick or ending up in the hospital - so they roll with whatever comes their way.
We have been blessed with a remarkable team of doctors and specialists who have been with us every step of the way. Because of their dedication to our children - they are here with us still today.
In their short lives, they have had to endure more than most human beings endure in ONE lifetime - yet they still are sweet, tender, innocent, loving, caring, and amazing!
Life for Will and Sasha has not been easy, but they still manage to laugh, smile, be happy and share joy like all the other kids they know....and we are SO grateful for the precious gifts of life that God has given us.
Will and Sasha have taught us what HOPE, FAITH, and LOVE was really all about.....and it is such a blessing to be parents to these 2 amazing souls!
They have also taught us what STRENGTH really is...and where is lies....it lies within us...ALL of us possess unfathomable strength - sometimes we just need to find the courage to dig deeper beyond our expectations to reach it!
Both children have developmental delays as well as various other health issues and they have overcome SO much in their short lives.
It's incredible how resilient these sweet children really are in the face of this disease.
Recently Sasha has been diagnosed with Episodic Ataxia Type 2 and Familial Hemiplegic Migraine - as well as them suspecting that she has Mitochondrial Disease or Dysfunction as a result of all of this. It has been a difficult year for her in particular and Boston has become our second home...but we are finding answers and learning how to help Sasha handle the various issues that these diseases cause. Throughout this journey we have met some wonderful people who have helped and guided us, and it has driven me to want to take what I know and share it with those in need of guidance, support, or advocacy.
The goal of this page is to provide support and resources to families who are battling Primary Immunodeficiency Disease....or any other disease - to raise awareness - and touch lives.
Together we can help each other find support - and together we can fight for a cure.
We may be walking down different paths, but we are on this long journey together!
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