https://www.facebook.com/103295145335930/

With Love From Gwen

Home
United States
Phoenix, AZ
With Love From Gwen

Those families experiencing 'Rare Disease' often have to experience many hospital stays, like our little Gwen.

Our goal is to bring comfort to these families through cozy blankets to make their stay more comfortable.

10/18/2023

We truly appreciate the staff taking extra steps to make an appointment for our heart warrior less scary.

10/15/2023

Who is enjoying being back at ‘school’? This little is for sure is enjoying it!!

08/08/2023

I paused my time on social media sharing Gwen’s heart warrior journey because it was mentally to painful. Now that she is doing well blossoming at two I feel it’s time to start sharing again and hopefully inspiring others with her journey.

02/05/2022

Gwen's scare is that piece of her that we hope she will have pride in one day. It is a representation of the fight for her life. Making it a daily reminder that she is so strong and can overcome other obstacles.

02/04/2022

There are some moments on any journey that are for just you and you alone. Then it comes to images of Gwen right after her surgeries. We have agreed not to share those images publicly. These images can never do justice to the anguish and pain of seeing your baby motionless fighting for their life, all while knowing your pain is nothing compared to what your child has gone through. For us, those are vulnerable moments that are just for our family to reflect on.

02/03/2022

Due to COVID, I learned there was something wrong with my growing baby by myself. Only one parent was permitted at the ultrasound, and when the ultrasound tech said, "I am going to get the doctor." It was evident that something was wrong. In the many appointments to follow, we would learn our second child had many of her organ systems in the wrong place, and her heart had an underdeveloped left ventricle with all the hearts plumbing in the wrong location, with her fetal diagnosis being called heterotaxy, specifically right atrial isomerism. This diagnosis told us that our daughter's arrival was going to change our families' lives forever.

02/02/2022

It is the start of heart month. Meaning it's time to bring awareness to CHD and the experience many families go through when their child is diagnosed. I will be sharing a post every day this month. Please help raise awareness by sharing Gwen's page. We are looking to share her story far and wide. So please help us raise awareness for CHD today!

01/27/2022

What a difference a year has made! Gwen has turned one this week. We had no idea what path our sweet girl's heart journey would take this time last year. After two open-heart surgeries, one cath procedure, too many doctor's visits to count, lots of therapy appointments, and many hospital visits our little is thriving. These little heart warriors are such fighters and can overcome all odds!

07/16/2021

We started this page to bring awareness to rare disease. There are 7,000 rare disease with many affecting children. Today you will be introduced to one of the many rare diseases affecting children from birth.

Around 1 in 100 are born with a congenital defect, making it rare but seen in 1% of births. As for Gwen, her defects is a rare disease called Heterotaxy specifically Right Atrial Isomerism which effects 1 in 10,000 births. This disease effect both her heart as well as the location of many of her abdominal organs. Each aspect of her form is unique to her and slightly different from the standard defects making her even more unique an part of a unique club of children born with a rare disease that must be treated early in life. In her case through many open-heart surgeries. As well as life long medications and monitoring. Putting her is a category of medicalized children who will always have extensive medical care due to their rare disease.

Address

Phoenix, AZ

Website

facebook.com

Alerts

Be the first to know and let us send you an email when With Love From Gwen posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Want your organization to be the top-listed Non Profit Organization in Phoenix?