Daniel Searles

KK Name: Daniel Searles

Age: 5

Cognitive Age: 4-6 (depending on area reviewed)

Therapies: Occupational, Physical, Speech and Hippo (horse) therapies

Schooling: Mainstream with 1:1 paraprofessional

Siblings: None

Parents: David and Rebecca Searles

Kabuki Symtpoms: Danial was born with a congenital heart defect, he is hearing impaired, has kidney issues, compromised immune system, intellectual disability, ADHD, Autism, flat feet, high arched palate, GI issues, short stature, hypotonia and hip dysplasia

Daniel's Story: When Rebecca learned she was pregnant with Daniel, it came as a complete surprise to her and David. They had not been trying for a baby, but sometimes things happen for a reason, and both were happy to welcome a child into their family. They learned early on that their baby would have some problems. At her 12-week ultrasound, Daniel was diagnosed with a cystic hygroma. According to the National Institute of Health, a cystic hygroma is a fluid-filled sac that results from a blockage in the lymphatic system. It is most commonly located in the neck or head area, but can be located anywhere in the body. Doctors explained that there was a high likelihood of congenital heart disease or a genetic condition. In Daniel's case, it would end up being both.

They opted to undergo an amniocentesis, which came back normal. But during her 20-week ultrasound, a critical heart defect was found. Daniel had Shone's Complex, left-sided multi-defect heart problem. So while Rebecca's pregnancy itself was relatively uncomplicated, it was very stressful. They made arrangements for Daniel to be transported to Boston Children's immediately after birth due to his heart defect, the doctors felt he would be better served in the hands of pediatric cardiologists. Rebecca was induced at 39 weeks and was born relatively quickly, just over 12 hours after the induction started. His heart rate was monitored closely as it kept dropping, but he managed to come the natural way, and when Daniel finally graced the world with his presence on 3/12/13, he was transferred straight to BCH. Just 8 days later, Daniel would undergo open heart surgery to repair his coarctation of the aorta.

Thankfully, the defects Daniel has that are associate with Shone's Complex have not required surgical intervention at this time, but he is monitored closely.

During his first year of life, Daniel had two major hospital stays due to illnesses, and at 6 months of age, he was diagnosed with an immune system deficiency. He began to receive immunoglobulin infusions on a weekly basis to help boost his immune system that didn't want to work on its own. He began to receive early intervention supports from the time he left the hospital, about 6 weeks after birth,  until he was 3. He struggled with eating and nutrition, landing him with a G-tube for support. It was was also discovered, after suffering from chronic ear infections, that he has a Eustachian tube malformation. He has had 4 sets of ear tubes to address this and prevent his ear drums from rupturing, which they are prone to do when no tubes are in place. He wears bi-lateral hearing aids to address his hearling loss as well.

At the age of 3, Daniel started pre-kindergarten classes in a deaf and hard of hearing program that supported communication through sign language. But when Daniel was about 4.5 years old, he was a full-blown talker! This allowed him to leave the program and attend the local public school where he is part of the school community. Rebecca reports that he has a best friend and lots of amazing people there who support him every day!

More recently, Daniel was diagnosed with bilateral hip dysplasia. In early 2019, he will undergo a reconstruction to help his hips stay in place.

One of the things Daniel struggles with is maintaining safety. He has an autism diagnosis, and he is a runner. Sometimes he becomes so disregulated that he is unsafe and needs support to return to baseline. For this reason, he wears a GPS locating watch to help ensure his safety, and locate him should he ever figure out how to truly get away. The Searles' have been working hard with Daniel's neurologist to determine an appropriate medication to help him, but it has proven difficult. The first three medications they tried, Daniel had an allergic reaction to. They are currently starting their fourth medication trial, and hopefully this one pans out so they don't have to worry quite so much about Daniel running off when he isn't supposed to!

Daniel is a lovable little boy with an amazing smile and lots of energy! Rebecca has the most amazing outlook on being his mom, too, "There are times that are certainly overwhelming, frustrating, angering and even sad.  But Daniel has the most amazing laugh and beautiful smile! He loves to give hugs and high-fives!  He works so hard and is such a blessing that I couldn’t imagine life as anything but what it is; this is our normal and I wouldn’t trade Daniel for anything!"

Daniel’s Favorites: "Daniel loves horseback riding, cooking, doing crafts and listening/watching dance videos. Daniel loves music and always wants the radio up “louder please!” He is a huge helper and loves to support those around him in many ways. And he loves his puppies! Daniel has a black lab (Toby) and yellow lab/terrier mix (Roxy) and his grandmother has a yellow lab/German Sheppard (Lilly) that Daniel adores! And Daniel always wants to play outside!

 

Daniel does not like loud/crowded places; he becomes overwhelmed and tries to run. He still struggles with certain foods/textures but is now eating by mouth (G-tube is still in place for hydration support and medication). Daniel also has a very difficult time with transitions and needs a lot of support."

Advice for parents of “typical” children: "Daniel may look “healthy” but illnesses are really dangerous to us. What might be a basic cold for you could land us in the hospital; please keep your sick children home. Also, please don’t feel sorry for us, be empathetic. Daniel is not a burden; he is an amazing blessing and we are so lucky to be his parents. Please teach your children acceptance of those who are different. My child wants all the same things as your child, to have fun and be included. He may learn differently or need additional support but he is a human being (like all of us) and deserves to be treated with respect and caring. And, as his parents, we do our best. Some days are better than others but please don’t judge us when Daniel is having a difficult time. He is not a “brat” or “in need of discipline,” he is a little boy who has been through more in his life than most people I know. He does his best and so do we."

Advice for Kabuki Parents: "Try not to compare you KK to other children; it is so easy to do and then becomes so heartbreaking. Our kids are amazing and they are so talented but we need to remember that they are working off a different timeline. Also, remember to take care of yourself. You can’t support all of your KK’s needs if you are running on an empty tank!"

 

How Daniel has impacted the family: "Daniel is our only child so this is the only life we know as “parents.” There are days that are harder than others. I find the most comfort in watching him grow and succeed in his goals. Being a Kabuki parent (KP) has certainly impacted my career, I’ve had to turn down employment opportunities to ensure that I could meet Daniel’s complex needs. It has also been hard on us socially as he requires a great deal of 1:1 support in all settings. As a KP I have learned to celebrate the “small victories” more so than I ever did before."

David and Rebecca weren't expecting to have a baby when they did, and when a lot of parents would have chosen other options, they decided to love their baby and care for him as best they could. Because of their love and devotion, Daniel has a fabulous chance at having a successful life and overcoming whatever obstacles are put in his path! His energy and love for life are contagious, you can't look at a photo of him smiling and not smile yourself! Life doesn't always give us what we plan for, or what we think we should have. Sometimes it throws us a curve ball. I'd say the Searles' hit this bad boy out of the park and are the best parents and advocates Daniel could ever ask for!

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All Things Kabuki (ATK) is a registered 501(c)3 non-profit corporation based out of Wasilla, Alaska. We are the only U.S. patient advocacy group supporting the Kabuki community globally. Our mission is to raise awareness, incite research, and support individuals and families affected by Kabuki Syndrome.
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