cure4dex

We are excited to announce that we are expecting a very special baby. Christina Hagelin and Wyatt McCarley are expecting their first child. It’s a boy!!! However he will come with many health concerns. Christina, like her mother, grandmother and aunt are carriers of a very rare primary immune deficiency called NEMO with Ecdodermal Dysplasia (ED). NEMO deficiency syndrome, also known as Nuclear factor-kappa B Essential Modulator deficiency, is a rare genetic disorder that affects the immune system. It's caused by a mutation in the NEMO gene, leading to an impaired immune response, particularly against bacterial and fungal infections. Individuals with NEMO syndrome are prone to severe infections like pneumonia and meningitis, and with Ectodermal Dysplasia will experience issues with the hair, teeth, nails, skin, and sweat glands. In 2007 the Hagelin family tragically lost their son, Christina’s brother Jack, to complications of pneumonia a year after receiving his life saving/changing bone marrow-stem cell transplant.

Christina has already undergone a CVS procedure. Chorinic Villus Sampling which is taking a sample of the placenta and testing the baby’s DNA for the NEMO mutation. It has come back positive… Jack’s doctor has already been contacted and is all over this. He has already made contact with specialists all over the country who are willing to take on this baby’s case. That said, Christina and Wyatt can possibly be traveling all over the country. The medical expenses will exceed what insurance will cover, as well as travel, lodging and living expenses, that’s why we are turning to Go Fund Me to not have any financial hardship during this journey. This baby has a great chance of surviving and thriving with the specialists who are undertaking his care as well as the love and support of his family and friends. Please join us in raising awareness and finding the cure. We also ask you to please join the national bone marrow registry at my.bethematch.org as a bone marrow transplant will be necessary. Thank you in advance for supporting Christina and Wyatt as well as baby Dexter!

Please follow Dex and the McCarley-Hagelin journey on Facebook cure4dex