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Latest families helped

THANK YOU!!!!! This is life changing/saving for this family.  Thanks so much!

That statement came from the social worker at the children’s hospital regarding the latest family we helped.

This family had a son born that has been in the NICU since March 21, 2022. It appears he will be in the hospital for a while longer as he is currently supported with a ventilator and is fighting for his life.

The family has limited resources and is currently on Medicaid. Even with that, there are a number of medical bills they are struggling to pay and had no clear way to pay them off.

After receiving and reviewing the application for approval, The Nikolas Foundation stepped in and paid their Lab bill, two outstanding doctor bills for the NICU and one additional outstanding doctor’s bill.

We continue our mission.

 

 

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Time to update the latest

It has been some time since we have shared anything about the Nikolas Foundation and thought maybe it was time. We have helped 5 families so far this year and all decided to opt out of sharing their story. This has kept us quiet as well as we respect their requests and understand the challenges. We have helped with Funeral Expenses, paid rent, bought groceries and even paid for flights for these families as they face difficult times.
 
We may be quiet, but we are still active. Our hope is that, now the Pandemic is quieting down, we can re-start our fund raising and take our processes to other Children’s Hospitals around the country. Will keep you all posted.
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A Happy Holiday and help for another family in need

Although the pandemic has affected both fund raising as well as the timing for helping families, we just completed another request from Primary Children’s’ Hospital for assistance.

Jai Jai Eduardo Lopez was born August 31 of this year in Idaho Falls, ID. He was quite premature and suffers from Necrotizing enterocolitis, which is a devastating disease that affects mostly the intestine of premature infants. The wall of the intestine is invaded by bacteria, which cause local infection and inflammation that can ultimately destroy the wall of the bowel. He has been in the NICU at Primary Children’s since shortly after being born.

Mom had to borrow a family member vehicle to drive the 188 miles and is currently staying at the Ronald McDonald house so she can be with Jai Jai. Dad has been traveling as he can but has had to travel on public transportation as he has no reliable vehicle for the journey. As mom stated in her application travel expenses have made an already tight budget even tighter and having to juggle rent, living expenses on top of the extraordinary medical expense has become very difficult.

In their request, they asked for help with travel expenses. After a quick review by the funding committed the Foundation agreed to buy a $500 gift certificate at Salt Lake Express for Dad to use to come to Salt Lake City to see his son as often as needed for the next few months.

We are once again humbled and honored to help alleviate some of the stress of caring for a special needs child. It was a wonderful way to finish the year and gave true meaning to the Holiday Season.

As always, thanks to all that have donated during this difficult year. We have been able to answer every call to date and honor the requests of the Social Work group at Primary Childrens.

As we enter 2021, we will continue our mission as long as we have money and the need. We have now validated our Mission Statement and the process for helping families. We hope to add additional hospitals and/or locations in 2021 and will be ramping up our fundraising efforts. We look forward to the challenge.

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Another family need met by the Foundation

This week the foundation had the honor of helping another family. Out of respect for the family we won’t be sharing names but this little one was actually born in Albuquerque, NM very early and flown to Primary Children’s hospital with liver failure. He fought a valiant battle but Heaven had other plans for him.

This family had many struggles and several groups stood up to help. Larkin Funeral Home in Salt Lake City waived most of their fees to assist the family in their time of grief. Primary Children’s travel organization picked up their hotel room while they were waiting for family to drive up from New Mexico to bring them home.

The Nikolas Foundation was approached by the Social Workers to help pay the funeral expenses that were not covered like permits, certificates and the Urn for his ashes. We were happy to accommodate and the family can now return to New Mexico with no debt or worries hanging over their heads.

Funeral expenses are something most don’t think about. Because of the needs of a special child, hours are spent away from work, home and loved ones. Imagine the depths of grief and having to try to figure out how you will pay to have your little one’s funeral taken care of and the bills paid. This is not the first and probably won’t be the last time we help with these kinds of expenses and are blessed to have the capability to answer the call.

Thanks again to all of you that have donated and believe in our mission. It would not be possible without you. Be proud that your dollars are going to a great cause.

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A flurry of activity for the Foundation

There has been a flurry of activity over the last few days at the Nikolas Foundation. We have helped three families that fit directly into our mission statement.
 
The first, because of the families request for privacy we can’t talk about but rest assured, we took their largest expense for the month off their list and they will have one less thing to worry about.
 
The second, a beautiful little girl named Paisley, was born with multiple anomalies that were finally linked to a diagnosis of Cornelia de Lange Syndrome (CDLS) that is a genetic disorder usually due to a mutation in one of seven important genes at or shortly after conception.
 
Paisley has been in the hospital since the first week of April and has an emergency tracheotomy, a GI tube placed and has been diagnosed with Tetralogy of Fallot, a heart problem that is transposition of the great arteries and stenosis and Micrognathia ,an underdeveloped lower jaw.
 
As you can imagine, taking care of Paisley and the hospital visits along with long job absences have put tremendous pressure on this family and their finances. As we worked with the Social Workers at Primary Children’s we identified a number of immediate needs.
 
First, her car had broken down and she had been unable to pay her car insurance. She was able to get a friend, who is a mechanic, to agree to fix her car. We got a list of the parts needed and, working with her local auto parts store bought all the parts so she could get it running again.
 
Second, we contacted her insurance company and paid the re-instatement penalty and a months insurance so that once she got the car running again, she could use it.
 
Finally, we contacted her landlord and paid for her rent for a month. All expenses that she will not have to worry about and she can focus on getting Paisley home.
 
The third family had an unexpected pregnancy and Carolina was born mid-August. Carolina was born with multiple anomalies and
Downs Syndrome. As, unfortunately happens more than most know, Dad decided it was too much and left mom to deal with all this.
 
With the CORONA pandemic and having to take so much time off, Mom lost her job. With no family she was basically alone dealing with this.
 
After speaking with the Social Workers, she has gotten a new job that will start next month. She has been able to get food stamps, for the first time in her life as a bridge to starting work.
 
Unfortunately, she has been unable to pay her rent. We got all the information, spoke to her landlord who was very understanding, and sent a check to cover her past due rent.
 
As she starts her new job, she can now focus on repairing her financial situation and bringing Carolina home. We will continue to monitor this one to see if there is additional help needed.
 
As always, we are humbled by the struggles of these special families. We are honored to be able to step in and take away some of their financial stress and help them on the road back.
 
We once again thank those who believe in our mission and have contributed to our cause. As always, if you want to donate we are a 501(c)(3) organization that will allow you to deduct any donations.
 
You can donate at: https://nikolasfoundation.org/donate/
 
Thanks to all of you.
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After a long Pandemic quiet time, another family helped by the Foundation

It has been some time since posting anything about the Foundation. The pandemic has affected everyone and we have had quite a dry spell of families in need of help as Primary Children’s, like most hospitals, has been focused on the pandemic.
This week the quiet was broken and we helped another family. This family is from Pocatello, ID. Mom has a fascinating and heartbreaking story. She had a kidney transplant at age 11. Recovered and married her high school sweetheart. In 2014 they decided to start their family. Because of her kidney transplant they knew that she would be high risk, but felt it was worth the effort and the medical Doctors monitored her pregnancy very closely.
On the first try, Mom miscarried at 10 weeks. In 2018 they decided to try again. At 33 weeks the baby boy developed problems in utero and was still born, a heartbreaking event.
This young couple decided to try once more. Based upon the story Mom told it appeared to be a normal pregnancy other than a couple of incidents of high blood pressure that was monitored and controlled. She had a doctors appointment in February and, after the ultrasound, the doctors felt she should be transported to Primary Children’s Hospital in Salt Lake City as the baby was having some challenges. According to Mom, the doctors left the room for a conference and, when they came back said that they needed to deliver the baby NOW. At 25 weeks Jace was born via C-Section with multiple complications. Jace was in the NICU at the local Idaho hospital until May when the decision was made to transfer him to Salt Lake City (a 3 hour drive away) where he has been fighting for his life ever since.
We were approached by the Social Service group at Primary Children’s as Mom and Dad were having a very hard time keeping up their jobs, expenses and still trying to visit Jace whenever they could. Based upon the discussions, the Foundation bought a $300 gas certificate to pay for the trips down and will be funding a hotel for the last weekend in August and every weekend in September. By removing the burden of cost for this period of time, Mom and Dad can safely make the trip and catch up on the rest of their bills.
Once again, we are humbled to be able to have a positive impact on the lives of folks who have to face the challenges every day of special needs children. It is our honor to be able to step in and fill a void that heretofore had no one to be able to assist.
As with many other non-profits, the Pandemic has virtually stopped donations to the foundation. If these stories touch you and you can comfortably donate any amount it would be greatly appreciated so we can carry on our mission. You can donate by going to https://nikolasfoundation.org/donate/ and give. It is 100% tax deductible and 100% of the net goes to our needy families as we have no employees and minimal expenses.
Thank you.
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Two more families helped by the Foundation

We helped our 11th and 12th families over the past couple of weeks at The Nikolas Foundation.
 
First was a family whose baby Axel was having complications in utero. Mom was bed ridden and had to go to the hospital every day for ultrasounds to monitor the baby. At week 24 Mom knew something was wrong so went to the ER. Mom was told that the only way to save the baby was to deliver the baby but the Doctors stated that Axel’s chances were very slim. He was delivered with a host of challenges with his lungs, his heart and a brain bleed. According to Mom’s story while doing a procedure the Doctors felt that Axel had passed, but when Mom and Dad came into the room he heart began beating again and Mom said it was the power of prayer.
 
Axel has been in the hospital since his birth on October 25. Like many families, Dad lost his job and the couple now lives on unemployment. Because there were a number of bills and rent, we did something out of the ordinary and sent a check to Mom to cover as many bills as possible. We hope the ability to reduce the stress of paying bills helped in some small way.
 
The most recent family helped had a son named Gentry. When we received the request for help, Gentry had been in the hospital for 111 days. Mom has only been able to work 28 hours a week and her husband has a work related injury that has kept him from earning a living. Mom has 3 teenagers at home as well, one with special needs, that require additional time.
 
She had a list of bills that had not been paid or they were paying minimums just to keep current. We asked what the most pressing bill was and she stated “rent”. We paid their rent for the month of April and it will allow them to pay down some of their other bills with the money left over. We pray that Gentry will continue to heal and be home soon and that our help lessened their burden.
 
Once again, thank you to all who have donated. With the current pandemic our fundraising has been at a standstill but we will continue to work with families as long as we have money to spend.
 
Be safe all.
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Back after some time off

After a couple of months off to recharge and reset we are back in the saddle at the foundation. We have reached out to our folks in the Clinical Social Work Department and they are again evaluating potential families for our help.

We look forward to sharing updates and stories. Our fund raising will continue as well.

Please donate if you are able. Thank you.

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2019 Year End Report for the Nikolas Foundation

Because of our small size, we are not required by the IRS to file a form 990 which is the standard reporting form for non-profit organizations. We report once a year with a simple form called 990N which basically states we raised less than $50,000. Because of the way we applied for our exempt status for the first three years, we can’t raise over $50,000 so we will be filing the 990N for 2019 and 2020 as we continue to build the future of the Foundation.

With that, we felt it necessary for our donors and for transparency to publish this report on our performance for 2019. If you have any questions or comments you can reach us a info@nikolasfoundation.org.

We officially came out of ‘stealth mode’ in December of 2018. We completed the set up of the 501 (c) 3 structure and got our determination letter from the IRS before we let the public know of our existence. We started fund raising in December and spent from January through the first of June working out details for our engagement with our first hospital. We also completed our 5 year strategic plan (which you can view here https://nikolasfoundation.org/wp-content/uploads/2019/02/Nikolas-Strategic-Plan-2019-v_1.pdf) assembled our Executive Advisory Committee and put in place the process for applying for funding from the Foundation.

We completed our first agreement with the Social Work organization at Primary Children’s Hospital in Salt Lake City and started funding families.

Over the last 6 months we have helped 10 families based upon the recommendations of the Social Workers at the hospital. We funded rent, car payments, gas cards, baby furniture/needs and funeral expenses. We validated our model and the need and just completed a year end review with the Social Work group at Primary’s. The feedback we got was humbling and gratifying and we were assured that, as long as we have funding, they will be more than willing to work with us as the Foundation fills a void for very specific needs of their Special Needs families.

From an accounting standpoint, we did not make our goals for fundraising but we were able to raise almost $22,000 all from individual donors. Our donations ranged from $25 to $5000 from our donors. The good news is that we never had to tell someone no because we had a lack of funding.

As our Mission Statement says, 100% of net funds go to those in need. That said, there were no salaries paid and will not be paid for those involved in running the foundation. We did have three expenses incurred by the foundation. $10 for registering the Foundation, $15 in bank fees for setting up the accounts and $139.50 that went to the credit card company for processing fees on donations we received through our web site.

For 2020 we will continue to strive to raise our maximum amount of $50,000. We will also start to explore taking our model to other areas of the country. Based upon our research there are approximately 57 stand alone Children’s Hospitals in the US. All could be candidates for the Foundation.

Thank you to all that have given over the past year. Your confidence in our mission and in our Foundation are humbling and very gratifying. It has been a 30+ year dream that has finally come to fruition and we hope that it can continue to help special needs families up close and personal.

We hope for all of you a joyous holiday season.

 

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Our 10th Family helped

Today we helped our 10th family since we started working with Primary Children’s Hospital.

Raeanna and Hope were born very early at 25 weeks.

Raeanne weighed in at a little more that 24 ounces has had to deal with IVH (hemorrhage on the brain), seizures and a number of challenges with her brain.

Hope was about 18 ounces with many of the same challenges.

Both born at 25 weeks and have been in the hospital since November 12th with an expectation that they will be there many months longer while they fight their battles and fight for their lives.

The Social Workers at the hospital dug into the family and put forward a recommendation. They have a number of children at home, the husband just got laid off and it is Christmas time. You can only imagine the pressure and challenges these folks have and will be facing as they have to make some very tough decisions about funds and cash flow.

It was recommended, and the Foundation approved to pay for this months car payment and January rent. The Foundation also was asked to buy a gas card so the family could make the trek to visit the twins in the hospital.

As stated, we approved this application in a day and when all is completed we will take about $1505 worth of bills off their plate so they can concentrate on the holidays and helping their babies get home.

As always, thank you all for your support. Our mission will continue into 2020 and, as funds allow, we will be looking to add new children’s hospitals to our sphere.