Helping Harley's Heart
Donation protected
The Beginning
The moment we found out we were expecting we were beyond ecstatic. Just one year prior we had lost our first child Orion to a miscarriage, so Miss Harley Rainn was our beautiful rainbow baby. We couldn't wait to meet her and were counting down the days until her arrival. We were in love with her as soon as we knew she was growing in my belly.
January 8, 2017 was the day she came into this world and allowed us to finally give her all the hugs and kisses we were dreaming about for 9 months. She was absolutely perfect in every way.
From the start we began planning her life. Thinking of the type of schools she would attend, what sports she would be in, how many languages she would speak, what career she might have, etc. We even talked about how hilarious she was going to be like her dada and how silly she was going to be like her mama. But not long after her birth all the hopes and dreams we had for her began to quickly change.
At our first pediatrician visit, we were told Harley had a heart murmur. We were obviously alarmed and upset, but were calmed when told that we shouldn't worry as they are often found to be benign.
Subsequent visits only brought worse and worse news. First that her heart murmur wasn't a non-issue like we'd hoped and most are, but instead that she had a congenital heart defect.
The defect specifically, is a narrowing of the valves. Which again, at the time, we were told not to worry, that it was just mild/moderate, they're fairly common and most kids grow out of it.
Our follow up visit showed an agressive progression from mild/moderate to severe in only one months time. Once more, it was something she wouldn't grow out of and now Harley would have to undergo a cardiac catherization procedure called balloon angioplasty to enlarge the narrowed arteries. She was scheduled the following week.
The very next day, at her regular Pediatrician exam, the Dr. suspected she had Williams Syndrome (now confirmed) and that it was likely the cause of all of this literal and figurative heartache.
Yet another thing that could go wrong did, news that took the wind out of us once more. We learned Williams Syndrome is a developmental disorder that directly causes the heart issues Harley is having. It's due to a deletion of genes in uetero in chromosome 7 and is pretty rare. We didn't even know what it was when we were told, but after countless hours of research we discovered that along with the congenital heart defects this disorder can also cause developmental delays and learning disorders. We spent days feeling anger, crying, more anger, and more crying. Finally, we stopped. We decided that no matter what we just wanted her to be happy and healthy and that as long as she is, then we could care less about anything else.
The next week brought the catherization procedure. Anxiously we waited.
"The procedure was unsucessful. Her valves are severly thickened. Not mild, not moderate, but severe. She will need heart surgery."
Hearing this felt like a dream, a horrible dream that we've since been unable to wake from and desperately wished weren't true.
Every visit we've had we'd hoped for a slight reprieve of some good news, but each one has only presented a new and much more difficult obstacle to overcome.
Where We Are Now
We haven't given up and we won't. Harley herself posseses a strength she gets from her mother that impresses everyone that meets her. I know that this alone would be enough for me to be confident that she is going to pull through.
We don't know what the future holds for our sweet baby girl. We don't know how her surgery will unfold. We don't know what additional help she will require. However, after our extensive research of Williams we have learned that we may have several future doctor visits, several special services that may be needed in addition to the costly surgery that our insurance does not fully cover.
Asking for help from you, my family and friends and even strangers, is something I never wanted to do. But my ego and any sense of pride is gone when we are trying to save our daughter. I don't have any incentives to offer for your help except for gratitude and the willingness to pay it forward once we are out of this hardship.
How We Will Use Your Help
The money will be used to cover all of our impending bills. I honestly don't know if what I'm asking for is too much or too little. However, what I do know is, if there is anything left over, we will donate the excess to other little ones in need here at Children's Hospital of Los Angeles, and if it's too little then we will just be grateful to the individuals that stepped in and provided us with any help at all.
Thank you
I'm hoping your help affords my family the opportunity to move forward together happy and healthy so that one day we can be the ones helping someone else in need.
If you can't help, we understand. Regardless, we would like to thank you for caring and appreciate that you've taken the time to read this far. We ask only that you please share this out into the world so that maybe someone else who can participate has an opportunity to.
With Love,
Chris, Ursula and Harley Gonzales-
P.S. If you do give, PLEASE email/message me personally and provide me with your mailing address so that I can send you a letter of thanks. All I have to give right now are my words, and I would like to share with you how grateful we are for your help.
The moment we found out we were expecting we were beyond ecstatic. Just one year prior we had lost our first child Orion to a miscarriage, so Miss Harley Rainn was our beautiful rainbow baby. We couldn't wait to meet her and were counting down the days until her arrival. We were in love with her as soon as we knew she was growing in my belly.
January 8, 2017 was the day she came into this world and allowed us to finally give her all the hugs and kisses we were dreaming about for 9 months. She was absolutely perfect in every way.
From the start we began planning her life. Thinking of the type of schools she would attend, what sports she would be in, how many languages she would speak, what career she might have, etc. We even talked about how hilarious she was going to be like her dada and how silly she was going to be like her mama. But not long after her birth all the hopes and dreams we had for her began to quickly change.
At our first pediatrician visit, we were told Harley had a heart murmur. We were obviously alarmed and upset, but were calmed when told that we shouldn't worry as they are often found to be benign.
Subsequent visits only brought worse and worse news. First that her heart murmur wasn't a non-issue like we'd hoped and most are, but instead that she had a congenital heart defect.
The defect specifically, is a narrowing of the valves. Which again, at the time, we were told not to worry, that it was just mild/moderate, they're fairly common and most kids grow out of it.
Our follow up visit showed an agressive progression from mild/moderate to severe in only one months time. Once more, it was something she wouldn't grow out of and now Harley would have to undergo a cardiac catherization procedure called balloon angioplasty to enlarge the narrowed arteries. She was scheduled the following week.
The very next day, at her regular Pediatrician exam, the Dr. suspected she had Williams Syndrome (now confirmed) and that it was likely the cause of all of this literal and figurative heartache.
Yet another thing that could go wrong did, news that took the wind out of us once more. We learned Williams Syndrome is a developmental disorder that directly causes the heart issues Harley is having. It's due to a deletion of genes in uetero in chromosome 7 and is pretty rare. We didn't even know what it was when we were told, but after countless hours of research we discovered that along with the congenital heart defects this disorder can also cause developmental delays and learning disorders. We spent days feeling anger, crying, more anger, and more crying. Finally, we stopped. We decided that no matter what we just wanted her to be happy and healthy and that as long as she is, then we could care less about anything else.
The next week brought the catherization procedure. Anxiously we waited.
"The procedure was unsucessful. Her valves are severly thickened. Not mild, not moderate, but severe. She will need heart surgery."
Hearing this felt like a dream, a horrible dream that we've since been unable to wake from and desperately wished weren't true.
Every visit we've had we'd hoped for a slight reprieve of some good news, but each one has only presented a new and much more difficult obstacle to overcome.
Where We Are Now
We haven't given up and we won't. Harley herself posseses a strength she gets from her mother that impresses everyone that meets her. I know that this alone would be enough for me to be confident that she is going to pull through.
We don't know what the future holds for our sweet baby girl. We don't know how her surgery will unfold. We don't know what additional help she will require. However, after our extensive research of Williams we have learned that we may have several future doctor visits, several special services that may be needed in addition to the costly surgery that our insurance does not fully cover.
Asking for help from you, my family and friends and even strangers, is something I never wanted to do. But my ego and any sense of pride is gone when we are trying to save our daughter. I don't have any incentives to offer for your help except for gratitude and the willingness to pay it forward once we are out of this hardship.
How We Will Use Your Help
The money will be used to cover all of our impending bills. I honestly don't know if what I'm asking for is too much or too little. However, what I do know is, if there is anything left over, we will donate the excess to other little ones in need here at Children's Hospital of Los Angeles, and if it's too little then we will just be grateful to the individuals that stepped in and provided us with any help at all.
Thank you
I'm hoping your help affords my family the opportunity to move forward together happy and healthy so that one day we can be the ones helping someone else in need.
If you can't help, we understand. Regardless, we would like to thank you for caring and appreciate that you've taken the time to read this far. We ask only that you please share this out into the world so that maybe someone else who can participate has an opportunity to.
With Love,
Chris, Ursula and Harley Gonzales-
P.S. If you do give, PLEASE email/message me personally and provide me with your mailing address so that I can send you a letter of thanks. All I have to give right now are my words, and I would like to share with you how grateful we are for your help.
Organizer
Christopher Gonzales
Organizer
Long Beach, CA