Family Support

As an advocate, one of the most meaningful ways that you can help is by directly supporting families. You can provide support in multiple ways; many of us have been blessed with the opportunity to do this and the impact that is has can be so profound for the advocate and for families.

I would like to share with you one family’s story about how not only the community supported them, but also several other EB moms and a very amazing advocate!

Anton Delgado 07312012 (29)My husband and I adopted our son Anton on March 17, 2013 from Moscow, Russia. Anton was born with Recessive Dystrophic Epidermolysis Bullosa and was two years old at the time we adopted him.

My husband wasn’t able to make the third trip to Russia with me to pick up our son because he had already gone twice and we had to stay an extra week on one of those trips. IIMG_1857 was so nervous to travel alone with Anton and I wasn’t really sure how it was going to all work out. I contacted Sandy Katzer who lives in Germany (and started DermaKIDS to help families who have children with Epidermolysis Bullosa) and asked her if she would be willing to travel with Anton and I from Russia to Texas. She had visited Anton while he was in the hospital in Russia several times and had taken him bandages and even helped the staff to know how to better care for him. She agreed to come and was very excited about getting to come to America for the first time. Sandy arrived in Russia the day after Gotcha Day (the day I was able to take Anton with me forever!) and was such a HUGE help to me. She helped me do wound care in Russia, get him ready to go places, helped me change his diaper and clothes and offered tons of support. On the plane ride home she helped me to entertain Anton, know what to feed him and what not to feed him and again was just very supportive.

Sandy did Anton’s first dressing change once we got home and taught me a lot about EB and wound care.

Anton was hospitalized three days after we brought him home and we were so scared not really knowing totally how to care for him yet and really not knowing how to care for him in the hospital where most of the staff had never even heard of EB.

IMG_2209Sandy stepped up to the plate and made sure that anyone who touched Anton knew what they were doing first. She secured his IV after the nurses placed it and she gave me lots of good advice for our hospital stay. She had to head home the day after he was admitted to the hospital and I was terrified to do a hospital stay without her help. She really was amazing and taught me so much! I do not know how I would have gotten Anton home and known how to care for him that first day in the hospital without her. Our family loves her so much and we miss her a ton!

Once we brought Anton home we were welcomed into the amazing community of supporters, and families affected by Epidermolysis Bullosa.

Anton was hospitalized three days after we brought him home and we were so scared not really knowing totally how to care for him yet and really not knowing how to care for him in the hospital where most of the staff had never even heard of EB.

Thankfully at that point EB Mamas stepped up and helped us more than we could have ever asked for. Courtney and her Mom Anita (Tripp’s Mom and Grandma) came and stayed for the first half of our hospital stay and taught me how to care for Anton, how to be confident that I was IMG_5224 (2) I was his Mama and knew what was best for him, and showed me through their love and affirmation that I could indeed do this and do it well. I could not have survived that hospital stay without those ladies. I love them so much and I will forever be grateful for their help.

IMG_5301 (2)Then Patrice Williams (Jonah’s Mom) stayed the last half of the hospital stay and helped with everything that had to be done before his surgery (he had to get a g-tube), and everything post op. I was terrified but she walked me through everything and helped to give me the confidence I needed to be able to care for my baby with his new tube. She also made patterns for me so I would know how to cut his bandages. I used those for six months before I felt confident enough to just cut them on my own. Patrice has helped me through all of his hospital stays, to not lose my mind and do what was best for Anton, even though she was only physically here for one of those stays. I love her so much and am so thankful for everything she has done for our family.IMG_5353 (2)

Our families have been such a huge blessing to us as well. They are always available to watch our kids or bring us a meal if we need it. There is no way we could do this without the love, help, and support of our families. We have been blessed with the best parents, grandparents, aunts and uncles that anyone could ask for. We love our family so much and know we couldn’t do this without them.

There are also several ladies in Russia that still follow Anton very closely and are always ready and available to help our family whenever we need them. They send Anton gifts, special medicine, and money to help us care for him and offer us a lot of support. They love Anton so much and have blessed our family so much. We love them all and consider them a part of our family.

During one of Anton’s hospital stays I desperately needed a bandage for Anton that I didn’t have. I posted on my FB page what I needed and Kim contacted me and said that she was going to try to find it. She spent hours on the phone trying to track down the bandage I needed and finally found a doctors office that was willing to give her some. She brought it up to the hospital and stayed with us during bandage change to help keep Anton entertained.

Kim has been an amazing help and a huge blessing to our family. Anytime Anton is in the hospital she brings my family home cooked meals and let me tell you Kim makes the most amazing food I have ever had. If we post that Anton is having a hard time she text’s me right away to see if we need anything and offers to bring a meal.

Judah and Anton turned three on January 16, 2013 and we had a huge backyard bash for their birthday. Kim came early and helped get everything ready for the party. There is no way we would have been ready in time if it wasn’t for her.

Kim is married, has two sons and still finds time to help our family too. Her husband has been great and has watched their boys several times so she could run a meal over to us. I know Kim couldn’t help us as much as she does if it wasn’t for the help of her husband David. Thank you David for letting your wife help us all the time.

Kim is there for us anytime we need her and she has been such a huge support to our family. When Anton is in the hospital I stay the whole time because the staff normally doesn’t know enough about EB for me to feel comfortable leaving him. So knowing that my family is getting home cooked meals at home thanks to Kim has helped me relax and be able to care for Anton while he recovers.

We love Kim and are so thankful for everything she has done for our family.

God has blessed our family so much by giving us a huge support system.

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