My name is Jennifer and I am proud to be the Mommy of Jacob, a 4 year old, about to be 5!!!!, little boy who is battling Spinal Muscular Atrophy Type I. SMA type I is very similar to ALS except it hits hard at a very young age. Jake is unable to sit, stand, talk, or eat. Everything we feed him is monitored strickly by me, MOM, and a dietician. I have to research and try and fail with baby foods, supplements, and fats/proteins. Jake eats ONLY through a g-tube and has strick guidelines. He has been breastmilk fed since birth, I pumped until he was 2.5 years old, and when my BM dried up he began receiving donor milk. We are trying to transistion him from BM, but currently he will only tolerate 3 mL of safflower oil for his fat and 1 TBsp of a protein supplement for his protein. In order to completely transition from BM, he will need to tolerate 2 tablespoons of oil and 3 TBsp of supplement...we are a long way off from that! I will say that BM has been a mainstay, over 40% of his calories, and what is keeping him healthy and growing. My son was only suppose to live months. Thanks to the grace of God, he will celebrate his 5th birthday in June and is still growing and glowing!
We had an awesome donor in Virginia who has kept us in business for the past year, but her baby has turned a year old and her milk has slowed down. If you live in NC, SC, VA, GA, or TN and would be willing to donate to my son, we would be greatly appreciative! As I said above, he is the world to me. I have driven a 10 hour round-tripper before to get him BM. Your generosity would mean the world to my son.
Please check out Jake's websites, www.our-sma-angels.com/fortheloveofjake or www.carepages.com/fortheloveofjake. Your generous donation would mean the difference in life.