Thank you to the Otteni Family for allowing us to share Holden and Miles’s story. In June, we received the heartbreaking news that Holden passed away suddenly at five months old. The Ottenis have generously allowed us to share their story with our friends and supporters, like you, in an effort to educate more people about harlequin ichthyosis while also spreading awareness about The Children’s Home & Lemieux Family Center and our services.
At The Children’s Home, we serve children and families from diverse backgrounds and with unique experiences to share. At Child’s Way, a daycare for medically fragile children located within The Children’s Home, we are proud to serve kids like Miles and Holden, along with all the other children and families who rely on the specialized services we offer.
At Child’s Way, there are five developmentally based classrooms and before- and after-school care from birth to age 21. We continuously work to provide an inclusive environment in which every child receives individualized care, therapy, and learning opportunities that are tailored to each of their needs. Child’s Way is just $32 dollars a day, and we also provide scholarships to offset this cost.
Meet Miles and Holden.
They were born with a rare medical condition called harlequin ichthyosis. Harlequin ichthyosis is a genetic skin disorder that causes plates of thick skin that crack and pull apart. Many people with harlequin ichthyosis look as though they’ve been severely burned.
Emily and Nick, their parents, explain that harlequin ichthyosis is almost like constant sunburn. The skin is unable to hold onto its outer layer and is constantly trying to catch up with itself. Each day, Emily and Nick take strict care of Miles, such as giving him a bath twice a day to keep up with the production of his skin and administering daily medication to stop the itching and pain.
This rare condition affects only 1 in 500,000 people, or about 7 births annually.
Miles is now two years old. Before Miles was born, Emily and Nick did not know that they both carried the harlequin ichthyosis gene. Less than 100 children in the world currently have this condition; however, when both parents are carriers of the gene, there is a 25% chance that the child will be born with it. So, for both Miles and Holden to be diagnosed with harlequin ichthyosis is an incredible rarity.
When Emily and Nick received the news about their firstborn having harlequin ichthyosis, they were unsure of how to handle the challenges ahead. They knew that they needed to work to help provide for their family, but they also needed to make sure that Miles was getting the proper medical care that he needed on a daily basis. Daycares would not accept Miles because of his intensive medical needs, and Miles was referred to Child’s Way.
“Finding Child’s Way was a gem, and it saved my family in more ways than one,” Emily said. At Child’s Way, Emily and Nick knew that their boys were safely protected and receiving medical attention that is specific to their needs, which Emily and Nick say is above anything else in their lives.
Miles and Holden enjoyed their time at The Children’s Home together. Prior to Holden’s passing in June, Emily and Nick could picture their boys growing into their personalities and the differences that come along with getting older.
“Miles absolutely loves dinosaurs, mac ‘n’ cheese, and everything about being outside. His new fascination is the Disney show, Bluey, which his older cousin showed him,” Emily said. “He’s beginning to become a reader. When Nick and I take him to Barnes and Noble to pick out books, he is always amazed the second he walks in. We love seeing his hobbies flourish.”
One of Emily and Nick’s main goals is to raise awareness and increase familiarity about harlequin ichthyosis. By explaining this rare condition to people, it creates greater understanding of what it entails. Emily and Nick make it a priority to teach Miles how to advocate for himself. They want him to be open with his condition and to be able to teach and educate others about harlequin ichthyosis.
“Because Miles does not have the ability to blend in with harlequin ichthyosis, we want him to confidently stand out, be happy, and to love himself,” said Emily.
Emily and Nick do not know where their family would be without The Children’s Home. Being able to send Miles and Holden to Child’s Way together, when Holden was alive, put them at ease because the brothers were together, safe, and taken care of while their parents were at work.
With the money saved by the generosity of The Children’s Home’s donors, the Ottenis were able to purchase a house and do fun things as a family while Holden was alive. They’re excited to continue those traditions with Miles.
On August 3rd, 2021, you have a chance to double your impact with a donation during The Pittsburgh Foundation’s #ONEDAY Critical Needs Alert.
Your help ensures that children, like Miles and Holden, can join their peers in an inclusive, educational environment and enjoy life as a little kid; not a sick kid. Soon Miles will return to Child’s Way without his little brother, and the staff will take care of him just as they always have. He’ll eat lunch with his friends and enjoy his little community of kids who are different, like him. Because of you, we can make sure that we’re there to support more families like the Ottenis in the future.