Meet the Alderin Family

BY LISA DEFILIPPO

calls New Palestine, where they have lived the past six years, their forever home. Emily grew up on the southeast side of Indianapolis and attended college in Illinois.

Corey grew up in Iowa and attended college there. The family has lived throughout the Midwest. Zoey was born in Chicago, Daphney in Kenosha, Wisconsin, and Bo, here in Indianapolis.

“When we moved back from Wisconsin, it was [because we wanted to be closer] to family,” said Emily. “We are very thankful we made that decision because Daphney spent the first two weeks in Indiana at Riley Hospital.” Since then, Emily says, it has been their family, community and church, and their steadfast faith in Christ, that has sustained them along their special needs journey.

“Daphney was born with a rare heart condition called total TAPVR,” Emily explained.

“We were helping at a church in Wisconsin and a foster care provider was attending with a baby. I let her know my husband and I were respite providers and if she ever needed help to give us a call. Well, she took us up on that. That baby was Daphney.

“Long story short, she didn’t think she could provide the best for Daphney, and asked if we knew anyone willing to foster a baby,” Emily continued. “We contacted the county and got fully licensed to become her foster parents and were finally able to adopt her on her second birthday.”

Daphney was diagnosed with TAPVR when she was one year old and underwent her first open heart surgery a year later to repair the left side of her heart and lung. TAPVR is a rare and critical congenital (present at birth) heart defect, where all four pulmonary veins connect incorrectly to the left atrium, mixing oxygen-rich blood with oxygen-poor blood, causing oxygen levels throughout the body to be less than what the body needs. Surgery is needed to repair the connection.

“After her first open heart surgery, we were told to never expect any doctor to complete the repairs due to the high risk of complications,” said Emily. “I did not like that answer, and I did not accept that answer; so I went to the ultimate Physician and asked Him to make a way. We, by the power and His way, ended up at Cincinnati Children’s Hospital for a second opinion and fell in love with the doctors,” she continued.

“When she was six years old she had a routine heart cath[eterization] done. At this appointment, the doctor told us he had been talking with the team of other cardiologists and they believed Daphney was big enough to do a less invasive heart procedure to correct the right side of her heart and lung. This would require multiple surgeries over the next year or so.”

“We knew the risks, which were actually really low with the type of surgery she was having done,” said Emily.

But after her second procedure, Daphney had a stroke, causing a massive brain bleed. She lost function of the entire left side of her body and was in in the hospital for 46 days.

Emily and Corey unabashedly give the glory to God for the days that followed. “She had her stroke during our church’s (Real Life, in Greenfield, IN) 21 Days of Prayer. Prayer started at 6 a.m. Our oldest daughter, Zoey, noticed something was wrong with Daphney shortly after 6 a.m. My mom let a pastor know what was going on immediately. People were storming heaven for us before EMS even arrived.”

Emily says the family played worship songs 24/7 on Daphney’s iPad in her hospital room; doctors would come in, sharing how they heard that same song that morning. Another doctor came in and heard the music and asked if she could pray for them. “God was working on our behalf before we even arrived at the hospital. I never doubted His plan or His reason,” said Emily. “It doesn’t mean I was not shattered and heartbroken. I remember calling my sister and sobbing. I just wanted Daphney to open her eyes and talk again. I missed the sound of her voice. I just wanted my baby back and I wasn’t sure that was going to happen this side of heaven.”

By the grace of God, Daphney’s story wasn’t over and she made a full recovery, although as a result of the stroke, Daphney started having seizures last April. Thankfully, they are controlled by medication, but the family is looking into getting a service dog to help alert them when she is having one. “Every day is a milestone with Daphney,” said Emily. “She should not be here. We thank God every day for her. I remember when she sat up for the first time at one year old. I remember when doctors told us her heart condition was not repairable, and God made a way. She has blood flow on both sides of her heart. She has not been hospitalized for a respiratory illness since 2019. She is succeeding in school with the help of some amazing aids. She is a shining star.”

Another special thing about this shining star is she has autism. “I first thought Daphney might be a little different when she was around one,” explains Emily. “We were on a flight home from vacation and I could tell she was sensory overloaded. Her eyes would roll up and she would shake her head back and forth. I started to notice loud sounds really bothered her and she always wanted to be very close to the TV or iPad.”

The family had First Steps do an evaluation when they settled in New Palestine, and she was evaluated and diagnosed at Riley Hospital for Children. “We have had some amazing therapists help us along the way,” Emily said. “Our First Steps therapist helped us get connected to ABA. Daphney had therapy through Beyond the Label and they were amazing. They helped us navigate behavior at home and gave us tips for school. Our BCBA came to an IEP meeting with us to learn what Daphney was doing in school so it could be integrated into her behavior plan at home.”

Daphney is considered high-functioning and attends Sugar Creek Elementary, where she is in a mainstream second grade classroom. “Her school has been absolutely amazing,” she said. “She has helpers that help her all day long to stay on task. She is allowed to be herself as long as she is not causing a distraction in the classroom. If she wants to stand and pace the back of the classroom, she can. If she wants to sit under her desk and cut up paper, she can. If she wants to stand and do work at the counter, she can.”

Emily says when most people meet Daphney, they think she is mellow, and all her doctors think she is the best patient. At home, she tends to be more expressive. “Daphney will talk to about 10 people and then communicate with her eyes with everyone else,” explained Emily. “Her softball coach said he has learned what her facial expressions mean. She does everything by learned behavior. Her best friend will be her best friend for the rest of her life. She will only play with baby dolls because that is what she played with in First Steps. Everything is scheduled and a certain way with Daphney. It has taken some time for us to get used to that, but we have fallen into a nice routine with her.”

The family enjoys staying busy and tries to stay flexible, making accommodations and bringing extra supports on family trips when needed. They enjoy attending family church camp each summer, camping in North Dakota every two years, and using school breaks for sightseeing around the country. Both Daphney and her sister Zoey, who attends Zion Lutheran School, are active in their church and serve on the Junior Dream Team, leading worship in their rooms. Bo attends New Palestine Elementary and loves playing with Hot Wheels and anything superhero, which Emily says is fine with Daphney, who only enjoys toys if her siblings do also.

“It is hard to describe Daphney. There are times we watch and see her being a social little girl and then the next moment she can be completely done and off to her room to be alone for hours. We think she is perfect, and we love her so much. God has been, and I believe, will continue to be, all over Daphney’s story.”

Daphney enjoys playing basketball and softball. She likes to dance and sing and play the piano. She loves to play outside with her brother and sister. Daphney’s favorite place to eat is Olive Garden. Her favorite food is spaghetti. Mom says when it’s her night to choose, the whole family already knows before they ask!

The family enjoys going to the movies, going for walks, swimming, and hanging out on the beach or at Southeastway Park.

Corey owns his own business, Telling Ministries, while Emily is a full-time homemaker.

Emily says the community of New Palestine is the best. “They really rally around you, support you, encourage you, and pray for you.”

1. Pray first and often. Do not let prayer be your last response. Prayer should be the first thing we do.

2. Allow others to walk this journey with you. Find mentors who are and have been through similar experiences as you.

3. As a family, encourage and champion your daughter/son/sibling in everything they do. They need to know, they are not a burden to the family.

4. Educate yourself on the things that make your child special and be their voice wherever they need you.

Because no two people are alike, and neither are their needs.

Not everyone processes their surroundings the same way. This can cause overwhelming situations for some individuals. Our team at Specialized Home Care Services is here to help you find the right solutions.

We provide sensory items that help with Focus for individuals that have trouble with fidgeting. Examples of products are wiggle seats, wobble stools, fidget items, sensory boxes, weighted vests, weighted stuffed animals, pencil top chews.