Ashlyn Gruen
Donation protected
Ashlyn Gruen is the almost two year old daughter of a wonderful couple, Jeremy and Kelli Gruen. Although we do not have the same blood running through our veins, we are family just the same and would be there for each other at any time.
Ashlyn has fought many battles in her short life, even before she was born.
She and her identical twin sister Brielle were what's referred to as Monochorionic Monoamniotic (MoMo) Identical twin sisters. This means that they shared one placenta and one amniotic sac. Meaning they had skin to skin contact in the womb (1 in every 60,000 pregnancies). Ashlyn & Brielle's umbilical cords were tangled from very early on. This is a common complication with this type of twinning. The risk of cord entanglement and compression in MoMo twins leaves only a 65% chance the twins will make it to delivery.
The girls were born via emergency c-section weighing just 2.7 lbs (Ashlyn) and 2.14 lbs (Brielle). They spent 80 and 55 days respectively in the NICU.
Fast forward to today and Ashlyn and her family have been dealt a lot.
At 1 year old Ashlyn was given her first diagnoses. Goldenhar Syndrome. Ashlyn was born with conductive hearing loss and wears a cochlear hearing device. She also wears glasses and uses a cpap machine at night. All of these things are associated with this diagnoses. Because of the goldenhar she was born with hemifacial microsomia, meaning half of her skull is smaller than the other side. There are many structural issues associated with this. Ashlyn will soon be having her epiglottis stitched back in attempt to clear some of the airway obstruction she is experiencing. After our doctors speak and talk about Ashlyns rare case it will be determined if she will be having a jaw distraction. Meaning that they will put screws in her jaw that mom Kelli and dad Jeremy will have to adjust over a period of time, to move her jaw forward, and out of the way of her breathing.
Because of Ashlyns need for special care, Kelli has been unable to return to work. In an attempt to put the family in a better position for living on a single income, they moved to Texas in October of 2015. It was with their new doctors there that some other concerns were brought up, and looked in to further.
In January of 2016, Ashlyn got her second significant diagnoses, Sacral Agenesis, also known as Caudal Regressions Syndrome. (Ashlyn has a handful of diagnoses but this is the main disorder that dominos into the many others she has). Ashlyn was born missing part of her spine. The L5 on her spine is deformed and she is missing all pieces of her spine below that, also known as your sacrum. Because of this she has severe spinal cord damage. The spinal cord damage has effected other parts of her body and will remain that way as there is no cure or surgery to resolve this at this time.
Upcoming and possible procedures:
- Epiglottis Stitching
- Multiple MRIs and CT scans to keep an eye on things (skull lesions, structural damage/issues)
- Jaw distraction
Accessories we have and need to continue with (i.e, updates, replacements as needed)
- Glasses
- Baha Cochlear hearing device
- AFO braces
- Leg braces for plantar fasciitis
- Cpap machine
- Gait trainer (walker)
- Nebulizer.
She uses all of these devices daily.
Ashlyn has therapy twice weekly, many doctors appointments, daily medications, and much more. Because of this the families medical bills have skyrocketed.
After reading all of this information and taking a second glance at this adorable picture, it is unimaginable that this tiny special little girl has such an uphill battle. That being said, as you can see from the photo, she has more spirit, fire, joy and personality in one little finger than most of us pocess in our entire bodies or in a lifetime.
Anything that you could find in your hearts to donate to assist Jeremy and Kelli in their journey to ensure that their precious little girl receives all of the treatments outlined above would be gratefully appreciated.
With Love,
Aunt Dani Parham
Ashlyn has fought many battles in her short life, even before she was born.
She and her identical twin sister Brielle were what's referred to as Monochorionic Monoamniotic (MoMo) Identical twin sisters. This means that they shared one placenta and one amniotic sac. Meaning they had skin to skin contact in the womb (1 in every 60,000 pregnancies). Ashlyn & Brielle's umbilical cords were tangled from very early on. This is a common complication with this type of twinning. The risk of cord entanglement and compression in MoMo twins leaves only a 65% chance the twins will make it to delivery.
The girls were born via emergency c-section weighing just 2.7 lbs (Ashlyn) and 2.14 lbs (Brielle). They spent 80 and 55 days respectively in the NICU.
Fast forward to today and Ashlyn and her family have been dealt a lot.
At 1 year old Ashlyn was given her first diagnoses. Goldenhar Syndrome. Ashlyn was born with conductive hearing loss and wears a cochlear hearing device. She also wears glasses and uses a cpap machine at night. All of these things are associated with this diagnoses. Because of the goldenhar she was born with hemifacial microsomia, meaning half of her skull is smaller than the other side. There are many structural issues associated with this. Ashlyn will soon be having her epiglottis stitched back in attempt to clear some of the airway obstruction she is experiencing. After our doctors speak and talk about Ashlyns rare case it will be determined if she will be having a jaw distraction. Meaning that they will put screws in her jaw that mom Kelli and dad Jeremy will have to adjust over a period of time, to move her jaw forward, and out of the way of her breathing.
Because of Ashlyns need for special care, Kelli has been unable to return to work. In an attempt to put the family in a better position for living on a single income, they moved to Texas in October of 2015. It was with their new doctors there that some other concerns were brought up, and looked in to further.
In January of 2016, Ashlyn got her second significant diagnoses, Sacral Agenesis, also known as Caudal Regressions Syndrome. (Ashlyn has a handful of diagnoses but this is the main disorder that dominos into the many others she has). Ashlyn was born missing part of her spine. The L5 on her spine is deformed and she is missing all pieces of her spine below that, also known as your sacrum. Because of this she has severe spinal cord damage. The spinal cord damage has effected other parts of her body and will remain that way as there is no cure or surgery to resolve this at this time.
Upcoming and possible procedures:
- Epiglottis Stitching
- Multiple MRIs and CT scans to keep an eye on things (skull lesions, structural damage/issues)
- Jaw distraction
Accessories we have and need to continue with (i.e, updates, replacements as needed)
- Glasses
- Baha Cochlear hearing device
- AFO braces
- Leg braces for plantar fasciitis
- Cpap machine
- Gait trainer (walker)
- Nebulizer.
She uses all of these devices daily.
Ashlyn has therapy twice weekly, many doctors appointments, daily medications, and much more. Because of this the families medical bills have skyrocketed.
After reading all of this information and taking a second glance at this adorable picture, it is unimaginable that this tiny special little girl has such an uphill battle. That being said, as you can see from the photo, she has more spirit, fire, joy and personality in one little finger than most of us pocess in our entire bodies or in a lifetime.
Anything that you could find in your hearts to donate to assist Jeremy and Kelli in their journey to ensure that their precious little girl receives all of the treatments outlined above would be gratefully appreciated.
With Love,
Aunt Dani Parham
Organizer and beneficiary
Dani Parham
Organizer
Albuquerque, NM
Kelli Gruen
Beneficiary
