Help for Baby Emry and her Family!

Hi I’m Marc, baby Emery’s Opa (Grandpa). I’ve never done anything like this but on April 23rd 2022, our entire world changed with the birth of our precious granddaughter Emry Nicole Hodges. She is my son Daniel and daughter-in-law Myia’s second child. Emry has a Big brother named Noah (3).

Almost immediately after she was born, Doctors realized that something was not right and Emry was taken to the NICU. Her first diagnosis was Hirschsprung’s Disease, which is caused by a missing nerve in the large intestine which prevents her from having normal bowel movements. Until this can be surgically repaired she will need regular bowel irrigations.

Doctors also realized that Emry was not breathing normally when she was asleep. After genetic testing our sweet angel was diagnosed with Congenital Central Hypoventilation Syndrome ( CCHS / Ondines Curse)

CCHS is caused by a mutation in the gene PHOX2B, which affects normal breathing. When Emry is asleep her brain fails to control her breathing, causing her to hold her breath or breath too shallow, dropping her oxygen levels to 40 and below, which is obviously life threatening anytime this sweet baby falls asleep.

CCHS is an incurable disease which affects only around 1500 people in the world. Emry will need a Tracheostomy and will be ventilator dependent for the rest of her life. As if those two diagnoses weren’t enough, she also was diagnosed with Neuroblastoma, a form of cancer.

Emry remains in the NICU in Plano and is scheduled to be transferred to Children's hospital in Dallas where she will receive the best care possible. She is expected to remain in NICU for several more month. Emry is blessed with the most amazing, loving, patient and nurturing parents she could ask for but she will have extensive needs from here on out and Myia will no longer be able work to help with the mounting bills. When Emry is finally able to come home she will require a full time live in nurse and extensive medical equipment for home and for travel to and from appointments she will have on a very regular basis. They live in a two bedroom apartment and will have to convert the dinning room into a medical nursery for her and a nurse. They also have a very small car that will not accommodate both kids and all of the ventilation equipment. For the time being they are commuting to the hospital to be with Emry on a daily basis trying to manage the exorbitant fuel cost and rising bills. We help with daycare bills for Noah and anywhere else we can but medical bills will soon be overwhelming for them.

any money raised for this beautiful little family will go towards a larger vehicle to accommodate all their needs, medical and fuel costs and hopefully eventually a three bedroom apartment so Emry won’t have to sleep in the dinning room.

Emry’s Mom and Dad would never ask for anything on their own and are doing everything they can to make ends meet. As Emry and Noah’s Opa it pains me everyday to see the struggle this beautiful young family has been thrust into without warning and I wish I could do so much more……….this is the reason I decided to creat this page to see what family and friends can do together. I firmly believe that God is in control and that his will will be done! I pray everyday for healing and guidance and strength which I know can only come from Him!

if you feel led to help, I know it will be forever appreciated and eternally rewarded by our savior. If you believe in the power of the Holy Spirit please say a prayer for sweet Emry, Noah, Daniel and Myia. We Love you all so much. Thank you for taking the time to read this.

If you would like to learn more about CCHS please go to CCHSnetwork.org.