“I wish every major hospital had a children’s house” –Dana Iniguez, mother of Daniel (age 8)
Miguel, Dana and Daniel Iniguez (age 8) have been staying at The Children’s House at Johns Hopkins since April 11. When Daniel was 9 months old, he was diagnosed with an extremely rare genetic disorder: Neurofibromatosis Type 1(NF). Shortly after this diagnosis, Daniel developed a brain tumor, beginning the family’s long journey to treat Daniel’s condition. The severity and rareness of his condition prompted The National Institutes of Health to monitor Daniel closely for the past 7 years. Recently, NIH discovered a tumor on Daniel’s sciatic nerve. Due to the severity of Daniel’s condition, the Iniguez family had to come to Johns Hopkins to excise the tumor. While Daniel’s three siblings are back home in California with his grandparents, he and his parents moved into The Children’s House at Johns Hopkins at the beginning of April.
Daniel’s surgery was scheduled for May 10th, during which doctors removed the entire tumor along with the whole sciatic nerve. He is scheduled to be released at the end of the week, and the Iniguez family wanted to share their favorite experiences from their stay at The Children’s House.
Therapy Dogs. Daniel has been missing his own therapy dog, who is with his family in California. While at The Children’s House, he was able to spend time with therapy dogs while recovering from his operation.
Family Dinners. Extenuating circumstances aside, all of the kids who stay at The Children’s House are just that – kids. During family dinners, the children gravitate towards one another as kids being kids.
Supportive Community. While the experience of each family is unique, the parents relate to one another in the way they care for their children in extreme situations. Even after families leave The Children’s House, parents keep in touch through social media, building a comfortable support system for one another.
Homelike Environment. Life at the Children’s House brings a sense of normalcy that the families do not always get to enjoy. Being able to cook dinners from a family recipe in their kitchen, as opposed to eating at restaurants or cafeterias, helps the family feel at home.
Fun Activities. Daniel’s favorite activities include art projects at the Children’s House, and his tours of the aquarium. And while he misses his siblings, Daniel has been able to Facetime with all three of them, and enjoys playing make believe with his younger brother.
Proximity to Hopkins. The Children’s House at Johns Hopkins is a very short walk from the Johns Hopkins Children’s Center; meaning the Iniguez family hasn’t had to rent a car, buy dinners out, or research or book hotel rooms.
When a family has a critically ill child, there is nothing the parents wouldn’t do to make their child healthy and comfortable. The Children’s House at Johns Hopkins strives to relieve the tremendous stress on the many families who are far from their home and support network. This experience has impacted the Iniguez family beyond measure. Dana wishes that every major hospital had a Believe in Tomorrow Children’s House associated with it. Along with the homey atmosphere and proximity to the hospital, it’s the Believe in Tomorrow staff, volunteers and donors who help make a very stressful situation more bearable.