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David,Our Angel -Our Love
By Andrea & Jose Escobar

I appreciate this opportunity to share my story. It is hard to start, but I will do my best.

My name is Andrea Martell - Escobar. I am 20 years old and reside in Miami, Florida with my husband Jose Escobar. We recently lost our son, David, as a result of Type 2 Gaucher Disease and we wanted to share our story with the National Gaucher Foundation and others who have gone through something similar.

I was just 18 years old when I learned that I was almost three months pregnant with the child of my boyfriend, Jose Escobar. We had been together for almost two years and, although it was unexpected, we were extremely happy and ready to receive our baby with arms wide open. We were fortunate enough to have our family's support on both sides. I was living with my mother at the time and, at first she was very surprised and a little upset, but eventually she also embraced the idea of having a baby around. I am the youngest on my side of the family, and unfortunately my older sister can't have children, so this baby was going to be the first grandson for my parents, and for Jose and I. He would be our blessing - our shining star. We had a beautiful and small civil ceremony in July,then I left for college for a year. We bought a small, beautiful house in front of a lake and we worked and saved everything for a our baby.

Our angel, David Alan Escobar, was premature and born on December 18, 2006. I had an emergency c-section, following preeclampsia, eclampsia, HELLP Syndrome or Hemolysis, so we both stayed in the hospital for a week and could barely see each other. David weighed 5 pounds 3 ounces and was about 17 inches long. Although he was delivered at 8 months - at first sight, he appeared to be a perfectly healthy baby, small but perfect.

We left the hospital to go home for Christmas Eve and I stayed at home to take care of him with the help of my mom,and went back to school part time in January just for the spring term. David seemed fine - with no big issues, just big smiles and low weight.

When he was about two months old, I changed to a great pediatrician named Dr.Jose L.Vargas and he immediately detected some potential problems in David. Because he had some neck rigidness, the doctor thought this could be Hypertonia and sent us to a Neurologist, then, a "stridor" in his throat sent us to a Pulmonologist, who diagnosed it as Tracheal Malasya. The Pulmonologist stated that David would grow out of it and the Neurologist diagnosed a very low Hypertonia and sent us to get some Physical and Occupational Therapy. At three months old, David started his therapy at Miami Children's Hospital. This, pretty much,became our weekly routine.

Overall, David seemed to be healthy and growing normally, except for low weight gain and some congestion that he couldn't shake off. He had a beautiful smile and he had charisma that couldn't be ignored. He was primarily breast fed, but also ate Gerber fruits and veggies. He was very alert and following all the right milestones as the months went on. We were all crazy about him. David received a lot of visits from all of our family members from Mexico and Ecuador, and he gave back a lot of smiles, love and good feelings. We never imagined our little angel was so sick. At five months we took him to Disney World and he enjoyed the trip so much,he wouldn't want to go to sleep.

Our nightmare began the morning of July the 8th. I was feeding David in the bed and my husband and I were playing with him when he suddenly started chocking on the breast milk. We immediately called 911 and they gave me instructions to do CPR on David until they arrived. When the emergency crew got there, we rushed him to Miami Baptist Hospital, where we stayed for almost two weeks. David had a lot of tests and saw a lot of specialists and because the doctors could not get a vein, a central line had to be connected. David's diagnosis included severe reflux and fluid aspiration and he was given antibiotics for the aspiration and respiratory therapy, as well as physical and occupational therapy.

We were sent home with instructions to give David no more breast milk, but a bottle containing a special high calorie formula and rice. A lot of follow up care was needed for our delicate baby. I can't say these days were nightmares, because we still had our baby - still happy and smiling, and growing, It was a lot of work,done with love, and we were thankful that we still had our son. We were willing to do anything for him.

Even with all of the care we gave David, unfortunately, he had another choking episode. This time I was ready and we called 911. I started CPR (which I had already learned at the Hospital) and we went back to Miami Children's Hospital that day, July 28 - one day after my birthday.

This time, our son had a feeding tube put through his nose and into his intestines. There was some talk about doing some surgery to implant the tube from the outside of his tummy to help avoid another choking episode and so I could feed him through there and he could gain weight. Again, there were lots of tests and specialists, but, this time we saw Dr. Jayakar, a Genetist, who just after reviewing David's file, suspected Gaucher Disease Type 2. She tested him for it and we were to expect the results within a week.

In the meantime, I did my homework and researched all I could about it. We were terrified. My husband and I were going to be tested as carriers, since this is a genetic disease. Some other doctors wanted to do more testing, including a bone marrow aspiration, but we would not allow David to go through any more suffering. David was great with everyone at the hospital - always had his characteristic smile and he was a great fighter who taught us how to love life.

On August 8, Dr. Jayakar called my husband and I to her office to give us the results that broke our hearts. Our son was a victim of Gaucher Disease Type 2 and there was no treatment and no cure. We did not know how much time we had left with our son.We enjoyed him that day and I slept with him in the hospital. We wanted to take him home, and just wait for God's will. We had to be strong and enjoy every minute we had left with him.

The next morning,my husband went back to work, (all the time the baby was in the hospital we slept, ate and lived there with him 24 hours a day.) I continually looked for any other source of treatment around the world and found out there was nothing, I spoke to the Social Services worker and told her that we wanted to take him home, and I also talked to some of the nurses, who were already like family for us and were suffering with us. Then our baby had another choking episode. We were asked if we wanted to intubate him, but we just didn't want to prolong suffering for him and we knew God would take him when it was the right time.

We called everybody so they could come and see our angel, David, one more time. God pulled his wings out the afternoon of August 9 2007, in the arms of Mommy and Daddy, nine days before his eight month birthday and one day after the diagnosis. We spent all together almost a month at the hospital and I must thank all the nurses, the doctors and the staff at Baptist Hospital, who put all their work and feeling into their task of saving David.We thank God for all the love he sent to us with our little angel and for every minute we had the privilege to spend with him. He left peacefully, and he left behind love, good feelings and beautiful memories for everyone who saw that radiant smile. The pain that we have for his loss is no greater than the amount of love and peace that he left in us, and we will live our lives to the fullest every day, thanks to him.

I invite you and encourage you to help with education and the search for a cure for Gaucher Disease, so that we can help to stop the suffering of more children and their families.

Thank you for letting me share my story, and I thank God for all the blessings that he gives us.

And for our baby - You gave us the pleasure of loving you and we will carry you in our hearts every day - and every time we see the sky and the star, or the sea, we'll feel like we are kissing you. We'll always love you. You are our inspiration.

Goodnight, David. You were well loved and always will be.

We found this out after he passed away: David, meaning chosen by God (in Hebrew). Festivity: August 9th. There was a party in the sky that day. 11/18/07.

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