Anton Delgado was born a twin in Moscow in 2010. His biological parents took home his healthy brother, but abandoned Anton because he had a rare genetic condition called epidermolysis bullosa. Anton's skin is as delicate as butterfly's wings and even the slightest amount of friction can cause crippling blisters.
In 2012, Vanessa and Jason Delgado of Haltom City, Texas, stepped in to adopt Anton from the Russian hospital. Now 5, he is at the University of Minnesota Masonic Children's Hospital recovering from a bone marrow transplant that will help stem the painful effects of his disease. Vanessa Delgado, 31, tells her family's incredible story of love and courage to TODAY contributor Susan Donaldson James.
In 2011, I read Anton's story on Facebook and knew he was to be our son. When it popped up on my news feed, I was crying, thinking about this boy without a mom. My son Judah and Anton are exactly the same age and even have the same birthday.
We always wanted to adopt a child. In 2008, when our daughter Kenya was 2, we had conjoined twins, who only lived an hour after their birth. We knew they had little chance for survival because they were joined at the chest and stomach and shared a heart and liver.
After seeing them fight for their lives, we became very medically minded and prepared in our hearts to take care of a child with special needs. Because of that, we started a blog and formed a big support group of parents who had lost babies in the same year.
One of the moms had a second child with epidermolysis bullosa, or EB, and that was my first exposure to the disease. They call them "butterfly children."
Read more: Healing the 'butterfly children': Treatment offers hope for rare skin disease
Anton's body does not produce enough collagen 7, which basically holds his skin together. The whole top layer of skin is floating and not attached to the body. If I pick him up wrong or if he rubs his nose, the friction causes his skin to come off.
With his type of EB, Anton's life expectancy is 20 to 30 years on average. Skin cancer and infection are the leading causes of death.
Anton was born out of a surrogate pregnancy and he has a twin brother. The parents took the healthy twin and left him. I couldn't fathom my son Judah laying in a hospital without a mommy. I knew Anton needed a family and I wanted nothing more than for it to be us.
I thought there was no way my husband would go for an adoption from Russia that was going to cost $40,000. But he said, "yes." We decided to just go for it. People take out loans for cars and houses, why not adoption?
We paid about $2,000 of our own money and we got a grant from Reece's Rainbow. Through this and fundraisers, our adoption was almost fully funded.
It took 13 months. There was a lot of paperwork and medical exams for us and the kids. When we got to Russia, we had to fight for him. It was just nine months before Russia banned all adoption to the United States.
Anton was 2 when we took him home, so he wasn't speaking a lot of Russian. We used signs for "please" and "more," so he would have basic communication. He was brilliant. Within two months, he could count in English and even say, "I love you."
Anton never had any attachment issues, because volunteers in Russia had banded together to help pay for a nanny who was with him all the time.
On March 26, Anton got a bone marrow transplant from Dr. Jakub Tolar at the University of Minnesota Medical School. We learned about it when Dr. Tolar was speaking at a patient care conference for EB in July of 2014. He talked about his latest research and we realized how much safer a transplant is now than it was a few years ago.
The goal of a transplant is to wipe out the immune system and then give him donor cells. That should give him the collagen he needs from the donor's immune system.
For us, the risk of not doing a transplant far outweighed the risk of doing it. We knew we had to do something to help Anton.
His skin used to be missing on his back and shoulders. His shirt would stick to his skin and I had to pry it off with coconut oil. It was horrible. Now, for the first time, he's not waking up with a bloody pillowcase.
The transplant was life-changing. Anton showed improvement only seven days afterwards; he is now growing only donor cells. It's not a cure, but it will give Anton improved quality of life.
For the last few weeks, Anton has been back in the hospital in Minnesota because of a high fever and we've been staying at the Ronald McDonald house. But despite that, he is such happy kid. He has a joyful personality and everyone loves him because he is so charming and sweet.
homeschool Anton with my other kids, because he is immune compromised after the transplant and can't be in super public places. Math and handwriting are his favorite subjects.
I keep myself positive. We trust in God and know he is in control of things. I can sit and worry, but God has already numbered Anton's days. We keep trucking along and never give him an excuse not to keep going. Faith is a huge part of that.
I have been involved with the EB Research Partnership. They are the largest nonprofit dedicated to funding research for a cure, which they say is within reach. It costs a lot of money, but when you get mama bears together, they will make it happen.
For anyone who is considering a special needs adoption, do your research and prepare your family. It's challenging and the days are hard, but it's so worth it. Anton has added so much to our lives.
Fuente: www.today.com
