Hi! My name is Ashley and I am a mother of an extraordinary, beautiful, and loving little girl named Anastasia Rose. Since Anastasia was growing in my belly, things have not been easy.
In utero, we knew that Anastasia limbs were growing extremely small and behind, she had suffered from brain bleeds and fluid on her brain, she had a six polydactyl toe on her left and was having issues swallowing. Due to these serious complications, Anastasia was monitored very closely at Children’s Hospital of Philadelphia where she was delivered May 1, 2018. Anastasia spent 127 days in the NICU where she under went many procedures. In the hospital, she had breathing issues, surgeries for a G – tube for feeding and nutrition purposes, intestinal malrotation and tethered cord spinal cord surgery. Through all of Anastasia’s challenges she always stayed strong and has held such an admirable tolerance for pain.
After discharge, Anastasia spends most of her Monday through Fridays doing therapy. She has been working with OT, PT, Speech, Aquatic therapy, commission of the blind therapy, hearing loss therapies and so on. Anastasia loves therapy and works very hard in all of them.
She also has had surgeries for her eye issues, ear tubes for her conductive hearing loss in her left ear, C1 surgery on her neck, muscle biopsies, multiple MRI & CAT Scans, every possible genetic test which have all come back negative.
As you can imagine, Anastasia has many doctor’s appointments. She sees Genetics, Neurology, Ophthalmology, Orthopedics, Pulmonary, GI, Audiology, ENT, Urology just to name some of her regular specialists she visits.
Anastasia is also part of a program called Project Walk, Anastasia is unable to walk at this point but we continue to work on it! Project Walk is not covered by insurance so we pay out of pocket for this weekly training that she truly loves.
While Anastasia has made big strides, unfortunately her long term prognosis remains unclear.
Anastasia is a happy little girl, who loves to smile and clap her hands. She loves Peppa the Pig, the sunlight on her face, watching birds, and laughing at her big brother Bobby.
The cost of Anastasia’s care can be trying. Even with insurance, we face many out of pocket expenses, on going rehabilitation therapy, medical equipment, and the reality of needing to make home and vehicle modifications in the future.
We are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with Catastrophic Illness.
Anastasia and her family have chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
Updates (6)
January 5, 2024
January 5, 2024
January 5, 2024
Hi all! It's been a while since I have had some time to share an update on Ana! In August 2023, Ana went under for her metal rod scoliosis surgery. It will be one of about 4. Her next one will be in about about a year. She is doing remarkable. I will provide a photo of her before and after! She also had some serious seizures in September 2023 which her neurologist believes are from the trauma of the surgery. Ana went through a lot of respiratory distress which turned into multiple close blues. The seizure was so bad she was rushed to CHOP and had to be intubated because of her carbon dioxide levels. We spent a few days in the ICU. Ana is still dealing with seizures but we are hopeful her medication of kepra will help her, she is currently having absent seizures which are not as "dentromental" to the brain they say.
Through it all she always has a smile on her face and continues to work so very hard! I will also attach some recent great walking videos!
June 20, 2023
Hello everyone it has been a while since I wrote up a post so I apologize. Ana continues to make progression in her own time :) Inch stones are our mile stones! I did want to mention she has undergone some procedures and surgeries in the last month but we are now preparing for her biggest yet. Ana's scoliosis curve has gotten really bad. The goal was to hopefully wait for surgery until 7, but her orthopedic surgeon needs to operate on her now on August 22, 2023. The surgery will be placing rods in her back that will connect to her ribs and spine to hopefully "straighten" her curve out. She will have magnetic growth plates that will "grow" with her for the next few years. Surgery will take around 5-7 hours. As you can imagine she will be hospitalized for a while and then need time for recovery and therapy to continue her progress. I am wishfully hoping that in time this will help our little Ana walk unassisted and stand alone! More to come and we will keep you all posted :)
Thank you for your love and kindness!!
June 3, 2021
Go Flyers Go!
June 3, 2021
Play Time!
Photo Galleries (1)
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Guestbook
December 31, 2023
Support from the Exton Kings
Michael Monsilovich
December 22, 2023
I am so glad to donate for your daughter and in memory of Joseph Bennie and their family.
Margaret Robinson
December 14, 2023
In honor of the memory of John Bennie
Patricia Wixted
December 11, 2023
Donation is in memory of Mr John Bene
Teresa Rappucci
December 8, 2023
In loving memory of John R. Bennie
Diana Juray
July 10, 2023
So sorry, I did not add my donation correctly when I cashed out at the Westville Brewery fundraiser.
Jim McLaughlin
July 10, 2023
Sorry we couldn’t make the Brewery gig last Friday. John and Cindy had invited us and we wanted to come out and support. Good luck and God bless.
Wayne Richter
July 8, 2023
Thank you for a great night at Westville Brewery!
Louetta Rossi
July 7, 2023
Good luck sweet Ana as you prepare for your surgery. <3 Heather and Jesse
Heather Hagan
December 18, 2022
This donation is from Checking for Charity.
Susan Larnerd
December 1, 2022
ASD supports Anastasia Rose Condon in memory of Kevin M. Lyons
Kathleen Kelley
October 29, 2022
We love you Ana!!! To the strongest little girl and the most beautiful family! Keep inspiring the rest of us!
Meghan Fabbroni
October 20, 2022
Go Ana!
Elizabeth Ackmann
October 7, 2022
Beautiful little girl,great family
Don Worrell
August 29, 2022
In Memory of Kevin Lyons
Alisa and Marty Czachor Jr.
August 28, 2022
In Memory of Kevin Lyons
Kathleen Kelley
August 27, 2022
In memory of Matt Petronis.
A neighbor and good friend for many years...
Stay strong Ana and family--I wish you the best!
Janet Ferguson
August 17, 2022
This donation is in honor of my father, Matthew Petronis. His kindness and generosity was unmatched, and he would be so humbled by the love and support our family and friends have shown. The Caruso family have been long time friends of ours, and have done so much for us over the past few weeks, in addition to the decades we have known them. With much love, we keep Anastasia in our thoughts.
Regina Petronis
August 16, 2022
Donated by Andrea Jalosjos on behalf of Matthew Petronis Jr.
Matthew Petronis
August 16, 2022
So happy to be able to help. It is so like Patty Petronis to ask for donations in Matt"s name. Such an amazing couple and they are helping a great cause. Matt will be missed.
Peggy Robinson
Peggy Robinson
August 15, 2022
In memory of Mattie Petronis, he will be missed by so many people. Our sympathy to his family. ⛳️ Shoot a hole in one up there in heaven. Show them how it is done.
Kevin and Sue Greene
Kevin&Sue Greene
August 12, 2022
Love you guys and love miss Ana <3
Tina Johnson
August 10, 2022
In loving memory of our dear friend Matthew Petronis and in support of beautiful Anastasia Condon. Love, Karen & John Dunn
Karen & John Dunn
August 10, 2022
This donation is in memory of Matt Petronis. ❣️
John and Sharon Sullivan
August 10, 2022
In memory of Matthew Petronis. God love Ana. Xo Maureen & Paul
Maureen Finnegan
August 10, 2022
In loving memory of Matt Petronis.
Agnes Smink
August 9, 2022
This donation is made to Anastasia to remember our friend Matt Petronis . May he Rest In Peace and love to Pat and his daughters.
Jack and Maureen Phelan
Maureen Phelan
August 9, 2022
In loving memory of Matt Petronis
Leanne Hogan
August 8, 2022
Sending our love in memory of Matt Petronis.
Love,
Valerie (Tutwiler) and Greg Mayer
Valerie and Greg (Tutwiler) Mayer
August 8, 2022
This donation is through me but from the gentle hearts of Matt Petronis and his family.
Mary Crean
August 7, 2022
May you Rest In Peace precious Matt! Heaven has truly found an angel ! Please accept our deepest sympathy pat! You were always such a precious couple ! Hold on to all of the fun times you shared together ! Love adele and dan
Adele and Daniel Bennie Carlin
August 7, 2022
In memory of Matt Petronis
Mark & Joy Stover
August 7, 2022
In memory of a dear friend Matt Petronis.
Dennis Morrone
August 6, 2022
We give in honor of Anastasia Condon in memory of Matt Petronis, who was a light in this world for all and a light now in heaven. We will miss his energy, spark and presence. Our prayers are with the Petronis family, Jon and Joanne Garwood
Joanne Garwood
August 6, 2022
We love & support warrior Ana! ❤️❤️❤️
Krystal, Bear & Linc Marshall
August 6, 2022
in memory of our lifelong friend Matt Petronis. In honor and support of Anastasia Condon.
Bob and Nanci Sinclair
August 5, 2022
The Josh & Rachel branch of the Wood Family donated in memory of Matt Petronis.
Josh Wood
August 5, 2022
I donate in memory if Matthew Petronis
Karen Capie
August 5, 2022
Patsy, Mary, & Regina - Love leaves a memory no one can steal. You all are in our prayers. We love you. - Bill, Detsy, Jen, Mike, Amy, Jim & Kids
Amy Tieman
April 30, 2022
Happy Birthday Ana!
Kate and Andy Quinlan
April 30, 2022
I’m so proud of you and Anastasia’s progress!
Deana Larro
April 30, 2022
Happy birthday Ana, we are so proud of you!!!
Morgan Caruso
April 30, 2022
Happy Birthday to sweet Ana!
Pat Kelleher
April 30, 2022
Happy 4th birthday princess Ana! You are such an inspiration to us. We love watching you grow and learn ❤️ Keep being awesome!!
Love,
Uncle Richie, Aunt Kathy, Ryan and Shane
Kathy Temple
April 29, 2022
Happy Birthday, Ana! We love you sweet girl.
Dawn Mariano
April 29, 2022
Happy 4th birthday princess!! Your strength is truly inspiring! Love, The Marshall Family
Krystal Marshall
April 29, 2022
Ana is the best! Happy Birthday!
Trent Booth
April 29, 2022
Happy Birthday Anna
Marie Abbott
April 29, 2022
You are an inspiration to us all, Anastasia!
Lisa Steenstra Lombardi
December 20, 2021
This donation is from Checking for Charity
Susan Larnerd
August 16, 2021
Dear Ana,
It was such a pleasure meeting you on Saturday! You are a special little girl with amazing abilities! Meeting your brother and parents proved to us why you are such a beautiful, happy and precious little princess!
Sending you hugs and kisses,
John and Jayne
John and Jayne Knee
August 13, 2021
Many Blessings for dear Ana!!!
Chris Gundersen
June 9, 2021
You are bright light in this world, Ana! Much love to you and all of your spectacular accomplishments achieved and all of those to come xo
Rebecca Hamilton
June 5, 2021
God Bless Anastasia!
Annette Marinelli
June 5, 2021
My heart fills thankful I can help❤️
Denise Caruso
June 4, 2021
Love you, Condon Family and beautiful Ana!
Meghan Fabbroni
June 3, 2021
We are so happy to make a contribution to assist with Ana’s uncovered medical expenses. Keep on smiling brave little girl! ❤️ Love, Bear, Krystal & Lincoln
Krystal, John & Lincoln Marshall
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Help Hope Live
Note in memo:
In honor of Anastasia Rose Condon
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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