Wish week is once again upon us here at the O. This year, we have double the fun, with twins Camila and Isabella. Scout was lucky enough to read a story written by Camila and Isabella’s mom about their lives. Below is the full, unedited story.
Camila and Isabella
The history of our lives
“The day my daughters were born was very special. I was really eager to meet them, and for some reason I thought I would finally rest after the exhausting period of pregnancy. But it was the complete opposite!
I didn’t sleep at all. I was so tired– it was so difficult! But I was also happy and amazed.
I had two identical, tiny babies, about the size of a small kitten. I had so many mixed emotions: fear, joy, curiosity, anxiety– all of that was because I didn’t know what to do or how I was going to take care of two babies at the same time. I think it was normal. Everything was fine until shortly after we were discharged from the hospital, when I took the babies to their first pediatrician appointment.
It seemed like a normal visit. The girls were checked, and we went home, until I received a call from the doctor. She said I needed to take the girls to the emergency department as quickly as possible, that they needed to check some things to make sure the babies were okay. I will never forget that day. We slept at the hospital, and they said the girls had to be admitted and needed blood transfusions because they had anemia
The next day I met Dr. McKennie, the hematology specialist at the children’s hospital. He told me that my daughters had been born with a blood disorder called Diamond-Blackfan anemia, and that more tests were needed because this disorder appears in very few people in the world– about 750 cases worldwide. He also said it was common for people with this condition to have heart defects, an incomplete organ, or a cleft lip.
We spent five days in the hospital, and I really didn’t understand what was happening. My English was very poor; I didn’t speak the language and understood very little. I was scared and cried so much.
That day changed my life.
The doctor said they would need to come back at least two or three times a month to check their blood levels and take a medication that would prevent them from losing blood so quickly. It was the recommended treatment because they were premature newborn babies.
Imagine how I felt seeing two tiny babies being poked with needles much bigger than their hands, and the nurses couldn’t find the right veins and had to poke them over and over again. The babies cried… and I cried too, out of sadness and pain.
We spent a long time in the hospital. They had no immune system, got sick very often, and I had to stay with them admitted for weeks at a time– for a long time.
And so the years passed, until the medication the girls were taking stopped working for Camila. She was four years old. It was terrifying. The next treatment option was a bone marrow transplant, but none of us in the immediate family were compatible. They searched donor DNA banks and found a frozen umbilical cord stored in Israel. They transported it to the U.S and ran countless tests on Camila.
It was time to begin treatment, and Camila was happy and unaware of what was happening. She played and laughed, she was joyful just as she is, and had no idea what was coming.
I can tell you that going through a transplant is extremely exhausting for anyone– emotionally, psychologically, and financially as well. It is incredibly difficult because you live in the hospital the entire time, which lasts about two and a half to three months. You shower there, eat there, and you can’t bring in any viruses or bacteria because that could seriously harm the patient. You have to stop working and put all your energy into this process.
I thought it wouldn’t be that hard, until after the transplant, when Camila started having complications in her stomach. She was rejecting the transplant in her intestines and colon. Her body was destroying itself from the inside because it didn’t recognize the new cells. It was horrible to see Camila in so much pain, with endless diarrhea, bleeding, skin infections.
Eventually, they prohibited her from eating. She couldn’t eat for 10 days and was given liquid nutrition through her veins. She got a bacterial infection that was eating away part of the muscle in her buttocks, and she had to undergo five surgeries for that. They had to cut her intestine and place a bag so her waste could exit through her lower abdomen, allowing her colon to rest.
She went through so much pain, and for about eight months we lived in the hospital. Eventually, she started a treatment that helped her but also damaged her bones, her eyes, her skin, her weight, and her muscles. She stopped walking and her muscles atrophied.
It was difficult and heartbreaking to experience, and I thought Camila wouldn’t recover. But God is wonderful, and he showed us his power every step of the way.
In the midst of all that suffering, Camila and I were accompanied by wonderful, amazing people who gave us their time, played with Camila, gave her toys, and brought joy to such a sad stage of our lives. There were people who helped us when we needed it most, in so many ways– just like you. You have gifts to the children at Christmas, and that made us so happy because it helped us forget, even for a moment, everything we were going through.
I am so grateful for those acts of love you showed us during that stage of our lives. It was wonderful. You gave us hope and joy by supporting families who go through such difficult experiences.
You are part of that blessing that came into our lives at that time– through the help, every event, and every effort you made. Truly, I tell you that God is in each one of you, in your loving actions, in your hearts, and in ours.
I am deeply grateful– forever– for making me feel supported during the moments when we suffered the most. Thank you all for all your love and support. May God bless you!”
Wish Week is February 9-13th. Please participate if you are able to get Camila and Isbella their trip to Disney!
