Help Rain Run (or at least walk)
Donation protected
We have always felt incredibly lucky. Even when Rain was first born and she weighed just over a pound and was clinging to life, we felt lucky.
We had so much going for us. Luckily the hospital Rain was born in not only had one of the best Neonatal Intensive Care Units on the West Coast, but it was also just 10 minutes from our house. We were lucky because we could be at Rains side for a crazy amount of hours every day without having to worry about losing our jobs. We met many families that just didn’t have this option. And we were lucky not only because Rain had this amazing team of Doctors and Medical Professionals caring for her, but also because from the very beginning we felt an overwhelming feeling of love and support from all of you (The Rainiacs).
From the very beginning positive thoughts, healing energy, prayers, good vibes, or whatever else you want to call it were sent our way. And they truly helped get us through some very dark, emotional, and tough times. And we honestly believe they helped Rain survive and get out of the NICU. How can that much good energy be out in the world and not have some type of positive affect? You will never comprehend how much it has meant to us over the years.
As Rain got older, and she received her Cerebral Palsy diagnosis, the Rainiacs have continued to channel their love to Rain. It’s evident from all of the likes and encouraging comments Rain receives when we post a video of her doing therapy, or using a new piece of equipment, or just trying something new like surfing or going to school. We have always felt so incredibly lucky to have all of you pulling not only for Rain, but for us as a family.
Now we feel lucky again. We feel lucky because in November of 2018 Rain had Selective Dorsal Rhizotomy (SDR) surgery. And since that surgery she has made amazing gains. The SDR, and her follow up PERCS surgery (on March 19), and the daily physical therapy she will have for the next year will give Rain her best chance to walk independently and to eventually live an independent life. And we feel so incredibly grateful that it was available for our family.
But none of it is free. Even with our insurance the costs relating to surgery and rehab/therapy will cost us about $30,000.00 of our own money. We have had many discussions on whether or not we should ask people for financial help. We know how lucky we are. We have always known there are families this isn’t even an option for. There are families whose kids are far more severe than Rain, and their day to day struggles are so much greater than ours. And we feel lucky and grateful to be in the position we are in.
But we do need help. On an average year, even with insurance, we spend about $10,000.00 out of pocket on Rains therapy and devices because we want to give her every possible chance to walk, gain independence, and live as “typical” a life as possible. After 5 years it has really begun to add up, and our finances have taken a real hit (if you are doing the math, that's $50,000 plus this years $30,000.) That’s why we have decided to ask for help.
The truth is, even if the only thing you can or are willing to give is thoughts, prayers, and good vibes for Rain and us, we will GLADLY take them. But, if you could donate, in any amount, to the fund we have created it would go a long way ensure Rain gets the most out of these surgeries and give her the best possible chance of walking and living an independent life. And it would mean more to us than you can possibly imagine.
And we completely understand if you are not in a position to donate financially. We do hope you continue to send the good healing energy. And every time you do, we hope you can feel our love and thanks bouncing back to you.
If you are able to donate and you want to leave a comment or words of encouragement for Rain, we are planning on making a book showcasing everyone's love and support so she can see just how many people have been pulling for her.
Thanks so much,
Team Struski
PS - Just a little back ground for people who may not be totally familiar with Rains complete story. Here is the short version:
Rain was born about four months too early on November 22, 2013. She weighed just over a pound (1 pound 2 ounces). She really had no business surviving. But she has always been a fighter. After about 5 months in the Neonatal Intensive Care Unit (NICU) at Huntington Hospital, and more than one VERY close call with death in that stay she defied expectations and finally came home.
She was on supplemental oxygen and considered too medically fragile to be around most people, but she came home. We expected to have many hospital visits. But again, she defied expectations. She weened off the supplemental oxygen and turned out to have a pretty stellar immune system, so we had no unplanned hospital visits during that time (yay).
When Rain was about two years old she was diagnosed with Cerebral Palsy (CP). CP is a wide ranging diagnosis. Luckily Rains CP is considered moderate, so in a ton of ways she is just a typical kid. But, her CP has had a drastic effect on her legs and on her balance. Rains leg muscles were way tighter (spastic) than a typical kids legs. And that has made it incredibly difficult for Rain to learn to walk or stand on her own.
But, like I said, she has always been a fighter. for the last three years since her diagnosis Rain has been getting physical therapy including numerous 'Intensive" therapy sessions at the NAPA Center in an effort to get her up on her feet and walking independently. And although she has become both stronger and more self confident because of these sessions, she is still unable to walk or stand unassisted.
Then we found about Dr Park and Selective Dorsal Rhisotomy (SDR) surgery which is a spinal surgery that targets the misfiring nerves causing the spasticity in her legs. After Rain received this surgery, in November of 2018 in St Louis, it was like she had a different pair of much looser legs!
She started going to therapy every single day and she even cranked out an intensive session at NAPA (where she went for three hours a day) and, after a ton of hard work, started taking steps in a walker for the first time in her life.
We honestly believe this would not have been possible without the SDR.
Now she needs to go back to St Louis for one more surgery (PERC) which will hopefully give her more range of motion and enable to live a more comfortable and independent life!
It's going to be a TON of hard work. The surgeries mandate that Rain has an extensive amount of therapy over the next year. Way more than is covered by our insurance. And that is why we ware asking for the help of our friends, our family, and our friends friends, and our friends friends families, and anyone else who is willing to help us out in anyway they can. We want to give her every chance to get the most out of these life changing surgeries.
So, if you can give, please give! And if you can't give, please share Rains story. And whether you can give or you can't give, please send positive vibes, healing energy, prayers, or whatever else you want to call it on March 19th (the day of Rains surgery). We will accept them all with open arms!
Thanks for everything!
Team Struski
We had so much going for us. Luckily the hospital Rain was born in not only had one of the best Neonatal Intensive Care Units on the West Coast, but it was also just 10 minutes from our house. We were lucky because we could be at Rains side for a crazy amount of hours every day without having to worry about losing our jobs. We met many families that just didn’t have this option. And we were lucky not only because Rain had this amazing team of Doctors and Medical Professionals caring for her, but also because from the very beginning we felt an overwhelming feeling of love and support from all of you (The Rainiacs).
From the very beginning positive thoughts, healing energy, prayers, good vibes, or whatever else you want to call it were sent our way. And they truly helped get us through some very dark, emotional, and tough times. And we honestly believe they helped Rain survive and get out of the NICU. How can that much good energy be out in the world and not have some type of positive affect? You will never comprehend how much it has meant to us over the years.
As Rain got older, and she received her Cerebral Palsy diagnosis, the Rainiacs have continued to channel their love to Rain. It’s evident from all of the likes and encouraging comments Rain receives when we post a video of her doing therapy, or using a new piece of equipment, or just trying something new like surfing or going to school. We have always felt so incredibly lucky to have all of you pulling not only for Rain, but for us as a family.
Now we feel lucky again. We feel lucky because in November of 2018 Rain had Selective Dorsal Rhizotomy (SDR) surgery. And since that surgery she has made amazing gains. The SDR, and her follow up PERCS surgery (on March 19), and the daily physical therapy she will have for the next year will give Rain her best chance to walk independently and to eventually live an independent life. And we feel so incredibly grateful that it was available for our family.
But none of it is free. Even with our insurance the costs relating to surgery and rehab/therapy will cost us about $30,000.00 of our own money. We have had many discussions on whether or not we should ask people for financial help. We know how lucky we are. We have always known there are families this isn’t even an option for. There are families whose kids are far more severe than Rain, and their day to day struggles are so much greater than ours. And we feel lucky and grateful to be in the position we are in.
But we do need help. On an average year, even with insurance, we spend about $10,000.00 out of pocket on Rains therapy and devices because we want to give her every possible chance to walk, gain independence, and live as “typical” a life as possible. After 5 years it has really begun to add up, and our finances have taken a real hit (if you are doing the math, that's $50,000 plus this years $30,000.) That’s why we have decided to ask for help.
The truth is, even if the only thing you can or are willing to give is thoughts, prayers, and good vibes for Rain and us, we will GLADLY take them. But, if you could donate, in any amount, to the fund we have created it would go a long way ensure Rain gets the most out of these surgeries and give her the best possible chance of walking and living an independent life. And it would mean more to us than you can possibly imagine.
And we completely understand if you are not in a position to donate financially. We do hope you continue to send the good healing energy. And every time you do, we hope you can feel our love and thanks bouncing back to you.
If you are able to donate and you want to leave a comment or words of encouragement for Rain, we are planning on making a book showcasing everyone's love and support so she can see just how many people have been pulling for her.
Thanks so much,
Team Struski
PS - Just a little back ground for people who may not be totally familiar with Rains complete story. Here is the short version:
Rain was born about four months too early on November 22, 2013. She weighed just over a pound (1 pound 2 ounces). She really had no business surviving. But she has always been a fighter. After about 5 months in the Neonatal Intensive Care Unit (NICU) at Huntington Hospital, and more than one VERY close call with death in that stay she defied expectations and finally came home.
She was on supplemental oxygen and considered too medically fragile to be around most people, but she came home. We expected to have many hospital visits. But again, she defied expectations. She weened off the supplemental oxygen and turned out to have a pretty stellar immune system, so we had no unplanned hospital visits during that time (yay).
When Rain was about two years old she was diagnosed with Cerebral Palsy (CP). CP is a wide ranging diagnosis. Luckily Rains CP is considered moderate, so in a ton of ways she is just a typical kid. But, her CP has had a drastic effect on her legs and on her balance. Rains leg muscles were way tighter (spastic) than a typical kids legs. And that has made it incredibly difficult for Rain to learn to walk or stand on her own.
But, like I said, she has always been a fighter. for the last three years since her diagnosis Rain has been getting physical therapy including numerous 'Intensive" therapy sessions at the NAPA Center in an effort to get her up on her feet and walking independently. And although she has become both stronger and more self confident because of these sessions, she is still unable to walk or stand unassisted.
Then we found about Dr Park and Selective Dorsal Rhisotomy (SDR) surgery which is a spinal surgery that targets the misfiring nerves causing the spasticity in her legs. After Rain received this surgery, in November of 2018 in St Louis, it was like she had a different pair of much looser legs!
She started going to therapy every single day and she even cranked out an intensive session at NAPA (where she went for three hours a day) and, after a ton of hard work, started taking steps in a walker for the first time in her life.
We honestly believe this would not have been possible without the SDR.
Now she needs to go back to St Louis for one more surgery (PERC) which will hopefully give her more range of motion and enable to live a more comfortable and independent life!
It's going to be a TON of hard work. The surgeries mandate that Rain has an extensive amount of therapy over the next year. Way more than is covered by our insurance. And that is why we ware asking for the help of our friends, our family, and our friends friends, and our friends friends families, and anyone else who is willing to help us out in anyway they can. We want to give her every chance to get the most out of these life changing surgeries.
So, if you can give, please give! And if you can't give, please share Rains story. And whether you can give or you can't give, please send positive vibes, healing energy, prayers, or whatever else you want to call it on March 19th (the day of Rains surgery). We will accept them all with open arms!
Thanks for everything!
Team Struski
Organizer
Matthew Struski
Organizer
Pasadena, CA