The Bridges Family
Our story starts with the passing of my son Mason in 2002. Mason had Pompe Disease, a rare metabolic disease that affects the muscles and heart. Babies usually don’t live to a year old! Mason lived for 7 ½ months before GOD took him home in 2002. (June 8, 2001 – January 26, 2002) Mason was a blessing that would later shed light and hope for our future!
I became pregnant again in 2005 with hopes of not having another child with Pompe disease but I was not so lucky. My sweet unborn child also had Pompe disease but he was able to start in the last clinical trial at Duke when he was 2 weeks old, he was the youngest patient to receive myozme infusions at Duke and his name is Dakota! Dakota is now a miraculous 5 year old, he gets infusions every 2 weeks for the rest of his life. I never thought he would live this long and pray that he shall live to become an old man!
I have a 12 yr old son named Tyler that does not have Pompe – thanks to GOD above! Tyler has been through a lot in his 12 years of life, he experienced a lot of loss and often wonders about Dakota but can be resentful at times because I have to take care of Dakota so much more at times! We also had to move from Georgia to South Carolina to be closer to family and Duke but now we are without family and we don’t get to see them too often which is hard for Dakota and Tyler; myself also! It’s just really hard in every way you may think possible! Mason is buried in Georgia and it’s been 4 years since we have been able to visit his grave. It makes us all so very sad!
Mason and all of the children who passed away from this horrible disease were the light and hope for our/Dakota’s future. They couldn’t experience life or even smile at times but the treatment gives the small Pompe family HOPE! The doctors at Duke have learned a lot from the children whom have passed away and the children that are still living by taking myozme infusions bi-weekly! Some children get infusions weekly!
Families like mine are in such need of so many things and I have found in my 4 years in Durham through Me Fine Foundation that if you need help Me Fine will find a way! We have been truly blessed by the help from Me Fine! There are no words to express our gratitude or happiness that Me Fine has brought our way but I can at least say that we smiled!!! Still smiling….smiling!
I have two older children Joshua (25) and Deanna (23) who are free of Pompe but they also feel resentful at times because we had to move so far away! God knows our plan and we will one day smile again, again and again!
Most Thankful –
Deanna, Tyler (12), Dakota (5), Joshua (25), Deanna (23)
And Blessed!
