- K
Hi, my name is Vica and I’m fundraising for my brother Christian and his wife McKenna. On May 26th, the day their daughter Natalia was born she was admitted to the NICU for being unable to maintain her body temperature. She was also very lethargic.
Soon after that the doctors discovered that she was having seizures. My brother and sis in law are first time parents and it was really difficult for them to see that and not understand what’s happening. After many days and many many tests they found out that she has a very rare genetic disorder called D-bifunctional protein deficiency. It’s a disorder that causes deterioration of the nervous system functions (neurodegeneration) beginning in infancy.
Newborns with D-bifunctional protein deficiency have weak muscle tone (hypotonia) and seizures. Babies with this condition never acquire any developmental skills. It is terminal. Most babies with this severe of a case don’t live past 6 months to a year. We don’t know how much time we have with her.
An example of her progression of her disorder is she is now completely dependent on oxygen whereas in the first 5 days of her life she didn’t need oxygen. Natalia is currently on three seizure medications and they are looking to add another because they have been unable to get her seizures under control. She will go days without having seizures but then when they start again she has multiple.
Today June 13th she has had over 20 seizures some more serious and severe than others but all extremely stressful and heartbreaking to witness.
Natalia has a feeding tube and can’t breastfeed because she will aspirate. Right now we are unsure if she will get to go home. It all depends on if we can get her oxygen level low enough. If she is able to go home she will have a full hospital set up and have home nurses to help.
Christian and Kenna are very grateful that their daughter qualified for MedicAid but the money you donate will go towards bills over the next several months, the family’s needs and towards Natalia’s funeral. Currently both parents are staying in the hospital with her.
Thank you for taking the time to read and for any donations. May God bless you!
Soon after that the doctors discovered that she was having seizures. My brother and sis in law are first time parents and it was really difficult for them to see that and not understand what’s happening. After many days and many many tests they found out that she has a very rare genetic disorder called D-bifunctional protein deficiency. It’s a disorder that causes deterioration of the nervous system functions (neurodegeneration) beginning in infancy.
Newborns with D-bifunctional protein deficiency have weak muscle tone (hypotonia) and seizures. Babies with this condition never acquire any developmental skills. It is terminal. Most babies with this severe of a case don’t live past 6 months to a year. We don’t know how much time we have with her.
An example of her progression of her disorder is she is now completely dependent on oxygen whereas in the first 5 days of her life she didn’t need oxygen. Natalia is currently on three seizure medications and they are looking to add another because they have been unable to get her seizures under control. She will go days without having seizures but then when they start again she has multiple.
Today June 13th she has had over 20 seizures some more serious and severe than others but all extremely stressful and heartbreaking to witness.
Natalia has a feeding tube and can’t breastfeed because she will aspirate. Right now we are unsure if she will get to go home. It all depends on if we can get her oxygen level low enough. If she is able to go home she will have a full hospital set up and have home nurses to help.
Christian and Kenna are very grateful that their daughter qualified for MedicAid but the money you donate will go towards bills over the next several months, the family’s needs and towards Natalia’s funeral. Currently both parents are staying in the hospital with her.
Thank you for taking the time to read and for any donations. May God bless you!
Organizer and beneficiary
Mckenna Khodyrev
Beneficiary