Our daughter Eden is a pure joy! She has overcome so much in her short lifetime so far. If there is one thing I wish people could know about her, it’s how incredibly strong she is!

When I say strong, I mean physically and spiritually. Eden possess a strength and determination like none of our other children, it can often be described as stubbornness! But I believe God created her and other children with Down syndrome this way because they have to overcome so much.

Just the simple fact that Eden, a child with Down syndrome, was born at full term is a miracle. According to Fetal Loss in Down Syndrome Pregnancies (1), 43% of pregnancies end in a miscarriage or still birth.

Before she made it out of the womb she was fighting to overcome a breech birth, PPHN, temperature regulation, low oxygen saturations, multiple heart defects, intestinal blockage, and on and on. She has so many diagnosis in her chart, I can’t even remember them all.

Eden had her first surgery at two days old! She had another surgery at 1 month of age, countless procedures and open heart surgery at 9 months of age. The CDC (2) states that 5% of children born with Down syndrome die before one year of age. This has been evident in our support group and our hearts break for those families that have lost their child.

When you hear or see people mention “The Lucky Few” it’s referring to the families that are lucky enough to be blessed with the gift of a child with Down syndrome. When you learn and see the statistics, as parents we realize how truly lucky we really are!

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2 “Data and Statistic on Down syndrome.” Center for Disease Control and Prevention, 23 Oct. 2020, https://www.cdc.gov/ncbddd/birthdefects/downsyndrome/data.html. Accessed 25 Oct. 2021

This is Ariel Eduardo Perez aka baby Eddie or Lalito in Spanish. Mom’s name is Dolores Velasquez and dad is Eduardo Perez. We reside in Bakersfield California.

Baby Eddie is 20 months old. We had a pre-birth diagnosis at 14 weeks. At first I had mixed feelings, but I knew we were chosen for a reason. I have felt so blessed ever since.

Baby Eddie is trying to walk, but he’s not quite there yet. He tries to sign a few words and he is overall perfect. He says mama and papa papapapa. LOL! Life has been so awesome with this lovable baby.

Not everything has been perfect. He has had a few surgeries and was recently hospitalized for pneumonia.  Baby Eddie is doing a lot better now and he is such a warrior.

We are the Reeds. This guy here is Kai! As with most families, Down syndrome was not what we expected when we found out about our little guy.

He is generally cheery and smiles at all. Kai’s love is good. He is the Boss and the sassiest of us all. Kai brings light on days that we struggle to find it.

Down syndrome has no affect on how much love we give, nor how much love we receive.

There isn’t much of anything we’d change about our guy, other than the couple of surgeries he’s had to have. Kai is the best and most amazing human being! We are incredibly happy to be blessed with him.

Did you know 80% of babies with Down syndrome are born to moms less than 35 years old! The myth that it only happens to older moms is FALSE.⁣ ⁣

I turned 28 a few weeks before we got married. We never really thought that we’d have issues having kids. Once we began trying, it seemed as if all we did was fail. The reality was the plan for us, was just different than we expected. Through infertility treatments I conceived at the ages of almost 33, 35 and 37. ⁣ ⁣

When we were trying to conceive Story, our doctor said the odds of us having a baby with Down syndrome increased a small percentage from when I was 35. I didn’t really thinking anything of it. I’m not sure if it was because I thought I was exempt from those odds or if it was because it didn’t matter.

Crazy enough our first treatment was a success. In the past it took round after round to conceive, so we were totally shocked with a positive pregnancy test. I’ve always declined prenatal testing in the past, just because I didn’t have any reason to do it. I chose to have it done this last time, because I wanted to know the sex of the baby. When the results came back we had no idea how lucky we were! I thank god every day for you, Story!⁣ ⁣

You can follow us on instagram @diannafox.

Click here to read Part 1 of Emberley’s story.
Click here to read Part 2 of Emberley’s story.

As the pregnancy went by I had more appointments than I ever thought were possible. It was like we lived at the high risk clinic. The day came to be induced. She came out into the world beautiful and more or less healthy. We named her Emberley, after the campfires that my husband and I fell in love at over the previous summer. Emberley, because she was a tiny little burning flame. A fighter.

They whisked her away to the NICU where she lived for 31 days for feeding difficulties, and congestive heart failure. We stayed at Ronald McDonald house for that whole month and finally took her home, on medications and a strict feeding schedule. When we got home there was more trouble. During our absence, our trailer had been destroyed by storms and some little critters that had decided to move in. We couldn’t stay there. We were homeless, with nowhere to go so we went to the county for help.

We had a rough several months, bouncing from hotels to Air BNB’s. Covid hit and we were basically stranded, with nowhere to go. No one wanted to rent to us and we couldn’t afford to keep renting Air BNB’s and hotels and also have money to rent a house.

Call after call got us nowhere. There were no rentals available. By some miracle, our social worker found someone willing to rent to us. I still don’t know how she did it, but she did. We were able to move into a beautiful 3 bedroom home with a nice backyard. It was even in the neighborhood for our older children’s school so they wouldn’t have to change schools, which was great. And we could actually afford it. It was definitely a miracle.

We hadn’t even been moved in for a week when we discovered Emberley needed emergency open heart surgery. Nothing could prepare us for the whirlwind, life would be. She ended up being in the hospital for another month of her little life. It was hard watching my tiny, precious baby be in pain. It was hard to process all of it and she had some complications from her surgery. One of them resulted in her needing an NG tube and eventually a G-tube.

Before her G-tube surgery it was discovered that she had malrotation of her intestines and would need another surgery. And of course another hospital stay. I feel like her first year of life she spent more time in a hospital than at home. That wasn’t the case but it is definitely what it felt like.

Fast forward a year, and our little Emberley is thriving. She survived open heart surgery, abdominal surgeries, failure to thrive, congestive heart failure, covid, feeding tubes, and multiple illnesses.

Emberley loves music and farm animals and cuddling. She is whip smart, and has so much personality. Emberley is the glue to our little family and we all love her so much. Everything changed for the better with her existence and I can’t imagine a life without her in it. It is as if everything we have ever experienced was preparing us for her.

Click here to read Part 1 of Emberleys story.

A few weeks later I was at a new friend’s house, when I got a call from my doctor’s office. It was the nurse and she asked me, “is it a good time to talk and go over the results?” I didn’t even think it could be anything other than “your results are fine, have a nice day!”

But instead, she started throwing numbers and statistics at me and I heard her say Down syndrome. It was like on Charlie Brown when all the adults just make the “Wah, Wah, Wah” noise. All I heard was “Wah, Wah, Wah, Down syndrome. Wah, Wah, Wah, genetic counselor, Wah, Wah, Wah, high risk.” I felt like someone ripped the carpet out from under me.

I excused myself and drove home on auto pilot, not even remembering how I got there. As soon as I walked through the door my husband new there was something wrong. I couldn’t even get the words out before collapsing into his arms and sobbing. I ugly cried. I sputtered and spat to try and get the words out. I felt like I was being punished. Life was already so hard and now this? What did I do wrong? Why was this all happening to us?

The next few weeks were a blur. We saw a genetic counselor and had an amniocentesis. It was discovered that our baby had a congenital heart defect that would require open heart surgery. That was the most terrifying of all. I seriously think I cried for 3 weeks straight. Once all my tears had been cried and I had no more left, we got the call that confirmed it. Our baby definitely had Down syndrome, Trisomy 21 in all of her cells. Her! It was a girl! We were having a baby girl! For some reason the diagnosis of Down syndrome and heart defect turned me completely around. I did a 180. I no longer laid around depressed and hopeless. I was on a mission.

My only objective was to get this baby here and in our arms safely. To change our situation and get it together, so we could give her a good life. A friend found a woman that wanted to pay it forward and give a Ford Explorer to a family in need and that was the first step up we had. With a reliable vehicle we were able to improve our situation just a bit.

Read the rest of Emberley’s story tomorrow!