Honor Baby Riley's Memory & Life
Donation protected
Baby Riley was born on May 03, 2016. Her Mom Kristen, Dad Vinny and Big Brother "J" were as excited as any family could be about the arrival of a new baby. Riley's family knew there would be some hardships with her birth because she was diagnosed in-utero with a Rare Genetic Disorder her mommy also has called Incontinentia Pigmenti (IP). What they were not expecting was the extra diagnosis's because of IP that Riley would become affected with.
On day 4 after her arrival Riley had a seizure. Tests folowing revealed she also had suffered a stroke and was having on going non clinical seizures. These seizures and secondary infection to one of her IP skin blisters kept Riley in the NICU for about a months time with many of it spent in critical condition as they were having a difficult time getting her seizures under control.
Mom and Dad were over joyed to be able to bring Riley home on June 22nd after such a long stay away without her Big brother "J". While Riley was in the NICU her eye doctor found that she had some hemorrhaging which leads to blindness in those with IP if not corrected as soon as possible. Riley was too weak to have the corrective procedure done right away in the hospital so her family waited patiently until she was strong enough but were enjoying every minute they had with her at home.
On, Thursday, August 18th Dad brought Riley back to the hospital for her "finally strong enough" pre surgical testing to have the bleeding in her eyes hopefully corrected and her vision saved. The what should have been uneventful pre testing however turned into a very unexpected turn of events that no parent or child should ever have to face.
Riley before her discharge from the NICU in June had her heart tested and nothing was seen to cause any concern at that time. During Rileys pre surgical testing her oxygen levels were considerably low and Riley was again admited into the hospital. After some very intensive testing of her central nervous system they revisited running heart tests on her and this is when PULMONARY HYPERTENSION was found. Riley was yet again given an additional diagnosis because of IP and new medications again were started immediately for her. On Monday, August 22nd, a test to check the severity of her Pulmonary Hypertension, that was scheduled to last 3-4 hours, medically for her safety, had to be discontinued early. Riley came out of the procedure to her Mommy and Daddy now in a medically induced coma and in critical condition because it was discovered that her Pulmonary Hypertension was a very severe case. Her family was told Riley would remain in critical condition for 3 days. That evening Riley had a crash that the medical team was able to bring her back from. On day 2, Tuesday, August 23rd, Riley had a full day of ups and downs as her little body was having difficulty regulating her blood pressure and oxygen levels. On day 3, Wednesday, August 24th, things changed for the better! It seemed Riley was showing signs of improvement and Mom and Dad had Big Brother "J" come up to the hospital for the 1st time to visit his baby sister Riley since her admittance on Thursday the 18th.
Then; Later that day Riley led the way and said enough……
Riley, fought with such admirable strength that she touched the Hearts of others from all around the world in countless ways.
Incontinentia Pigmenti (IP) for Riley; not only brought the skin affects, a stroke, seizures, and possible blindness ... Incontinentia Pigmenti also brought Pulmonary Hypertension (PH) to her.
Riley is a "Warrior" in all of our eyes and will forever remain in all of our Hearts.
In Memory of Baby Riley, In Lieu of Gifts, Riley's family would like to Honor Her Fight and Honor Her Life. ALL donations received will be solely used for the purpose of supporting the phenomenal hospital that fought tirelessly for and with Riley. 100% of every cent received will go to the Pulmonary Hypertension Program at the Cohen Children's Medical Center of New York In Honor and In Memory of Riley Pompo for Incontinentia Pigmenti with Pulmonary Hypertension . Riley's family has requested in collaboration with her treating doctors that a full autopsy be preformed to help better the future for all infants with Incontinentia Pigmenti and Pulmonary Hypertension that will follow in her footsteps.
Thank You,
Laura Richter
President and CEO
Incontinentia Pigmenti International Foundation
NY, NY, USA
www.ipif.org
~and~
THE POMPO FAMILY
IPIF is a 501(c)3 organization, duly organized as a Not-for-Profit Type B Charitable Organization under the laws of the State of New York.
On day 4 after her arrival Riley had a seizure. Tests folowing revealed she also had suffered a stroke and was having on going non clinical seizures. These seizures and secondary infection to one of her IP skin blisters kept Riley in the NICU for about a months time with many of it spent in critical condition as they were having a difficult time getting her seizures under control.
Mom and Dad were over joyed to be able to bring Riley home on June 22nd after such a long stay away without her Big brother "J". While Riley was in the NICU her eye doctor found that she had some hemorrhaging which leads to blindness in those with IP if not corrected as soon as possible. Riley was too weak to have the corrective procedure done right away in the hospital so her family waited patiently until she was strong enough but were enjoying every minute they had with her at home.
On, Thursday, August 18th Dad brought Riley back to the hospital for her "finally strong enough" pre surgical testing to have the bleeding in her eyes hopefully corrected and her vision saved. The what should have been uneventful pre testing however turned into a very unexpected turn of events that no parent or child should ever have to face.
Riley before her discharge from the NICU in June had her heart tested and nothing was seen to cause any concern at that time. During Rileys pre surgical testing her oxygen levels were considerably low and Riley was again admited into the hospital. After some very intensive testing of her central nervous system they revisited running heart tests on her and this is when PULMONARY HYPERTENSION was found. Riley was yet again given an additional diagnosis because of IP and new medications again were started immediately for her. On Monday, August 22nd, a test to check the severity of her Pulmonary Hypertension, that was scheduled to last 3-4 hours, medically for her safety, had to be discontinued early. Riley came out of the procedure to her Mommy and Daddy now in a medically induced coma and in critical condition because it was discovered that her Pulmonary Hypertension was a very severe case. Her family was told Riley would remain in critical condition for 3 days. That evening Riley had a crash that the medical team was able to bring her back from. On day 2, Tuesday, August 23rd, Riley had a full day of ups and downs as her little body was having difficulty regulating her blood pressure and oxygen levels. On day 3, Wednesday, August 24th, things changed for the better! It seemed Riley was showing signs of improvement and Mom and Dad had Big Brother "J" come up to the hospital for the 1st time to visit his baby sister Riley since her admittance on Thursday the 18th.
Then; Later that day Riley led the way and said enough……
Riley, fought with such admirable strength that she touched the Hearts of others from all around the world in countless ways.
Incontinentia Pigmenti (IP) for Riley; not only brought the skin affects, a stroke, seizures, and possible blindness ... Incontinentia Pigmenti also brought Pulmonary Hypertension (PH) to her.
Riley is a "Warrior" in all of our eyes and will forever remain in all of our Hearts.
In Memory of Baby Riley, In Lieu of Gifts, Riley's family would like to Honor Her Fight and Honor Her Life. ALL donations received will be solely used for the purpose of supporting the phenomenal hospital that fought tirelessly for and with Riley. 100% of every cent received will go to the Pulmonary Hypertension Program at the Cohen Children's Medical Center of New York In Honor and In Memory of Riley Pompo for Incontinentia Pigmenti with Pulmonary Hypertension . Riley's family has requested in collaboration with her treating doctors that a full autopsy be preformed to help better the future for all infants with Incontinentia Pigmenti and Pulmonary Hypertension that will follow in her footsteps.
Thank You,
Laura Richter
President and CEO
Incontinentia Pigmenti International Foundation
NY, NY, USA
www.ipif.org
~and~
THE POMPO FAMILY
IPIF is a 501(c)3 organization, duly organized as a Not-for-Profit Type B Charitable Organization under the laws of the State of New York.
Organizer
Ipif IP
Organizer
New York, NY
