Ben's family needs your help more than ever. They are facing enormous financial and emotional strain after the sudden death of their 9 year old autistic son. They sought refuge in the church, but have been met with denials or passed along to the next program. They are at risk of losing their storage unit that contains what little they have left of their sweet Benny. Please share and consider donating to this fundraiser. Show them that God's word is strong and that those who believe in Christ, will remember what Matthew 25:40 says.
**On June 7th, 2023, Ben was taken off of life support after suffering an AFib/cardiac arrest episode that was brought on by prolonged SVT and steroids. On June 4th, 2023, he was brought to the ER for fluids and to make sure he didn't aspirate vomit from one of his cyclic vomiting episodes. However, the ER staff refused to listen to his mother/caregiver and disregarded the advanced life support alert that was sent by the EMT that discovered Ben's heart rate was over 220 bpm. This was confirmed by an ECG. Ben suffered a massive heart attack and was found to have been hypoxic long enough to cause brain death. He coded for over 30 mins and suffered injuries that he couldn't recover from. His family has spent the last 10 years, fighting for his life only to lose their child in such a cruel way. Had his SVT been treated, he would have come home alive. Instead his family now has to fight for the truth and hold the hospital accountable. Please share Ben's story and be his voice. You can follow his family on Facebook, for more details.**
Ben and his family need your prayers, your efforts and your support. They have devoted everything to their children's medical and education needs, but need additional support from you.
Their 24 year old motorhome needs generator repairs, and the roof must be resealed. The propane system doesn't work and they would like to find an alternative option. They desperately need to purchase a vehicle. They want to work and maintain everyday life for their family. Please read their story below.
Ben is not your typical 9 years old boy. On the inside, his body is battling debilitating illness. He has so much love to give and often is trapped inside of the barrier known as Autism and chronic illness. Ben has a genetic condition that is ravaging through his body, causing pain and kidney issues. Ben now has seizures and struggles with low muscle tone. Ben is nonverbal and cannot tell us when he hurts. He no longer can eat by mouth and struggles to keep his weight up. He is scheduled for his Endoscopy to determine alternative options for feeding such as a G-tube. His family is pushed beyond all limits and need your support. They are both working, but it's not enough to cover the medical needs and repairs their family has.
Ben is one of three children in the home that have Autism and are medically compromised by genetic conditions. Ben, Ryley and Noah, require countless hours of physical and occupational therapy, physical therapy, speech therapy, ABA as well as neverending doctors appointments.
After years of fighting to stay afloat, the family of 6 now resides in their 24 year old Class C motorhome that is in need of major repairs. They travel for medical needs and for work. Due to health conditions, the children can no longer attend regular school. The family has opened a Christian homeschool, Sweetland Academy. They are amazing children who love the Lord and deserve support. All of this has taken a huge toll on the families finances. Due to the ongoing needs of the children, the parents have nearly lost their family business (Sweetland Repair & Low Voltage LLC).
Ben requires 24/7 care and is often to much for one person alone. There is no respite available for him. His innovations waiver will take years or even a decade in NC. His medical condition is worsening and the family cannot get the help they need fast enough. The family has depleted ALL of their savings, stocks, assets and are not eligible for unemployment, as they own their own business.
Despite all of this, they still believe that God makes no mistakes. That each child is here for a purpose. Please help this family continue to stay afloat during one of their most challenging battles yet. Please share and donate, if possible. Thank you and God bless you all.
Let us remember Acts 20:35, Luke 14:13-14 and Matthew 25:40. Be Ben's Voice and support his family while they continue to make a way for their children.
UPDATES
We don't know how to navigate life without him. September 1, 2023
For those asking about what happened:
Please visit our page to see his mini movie
https://www.tiktok.com/t/ZT8YgyCKJ/
On June 4th, he was seen in the ER after a brief cyclic vomiting episode. Ben was level 3 Nonverbal autistic and developmentally disabled. He was diagnosed with a genetic condition that causes nephropathic cystinosis and DMDD. We usually had to sedate Ben due to his medical issues, so EMS was called to transport him to our local hospital. We were advised by his pediatrician to make sure he had not aspirated vomit and was not facing dehydration. While en route to the hospital, the EMT found that our son's pulse rate was above 220 bpm. An advanced life support alert was made to the hospital as we were pulling into the bay. Despite all of my pleading to get him on another ECG to monitor his heart rate, the ER attending gave him Albuterol which furthered his SVT (Super Ventricular Tachycardia). His chest x-ray was mostly clear. His SVT was never treated and Ben went into AFib and Cardiac Arrest. He was hypoxic for over 30 mins and his brain never recovered. His lung was punctured through his left side during intubation because they allowed him to decompensate so badly. He was in hypoxic shock. His arm was burned by them trying to push sodium bicarb and Calcium, with no pulse. He suffered total brain death (HIE). I have his entire code on video, as I was originally sending videos to his father who was at home with our other two special needs children. After multiple EEGs, Head CTs, and zero brain activity, he was taken off of life support on June 7th, 2023, and died within 5 mins.
I had to petition for an autopsy not once, but twice and was denied both times. It took me contacting the chief medical examiner and they overturned the denials and took him to ECU for the autopsy. This was nearly 3 weeks after he had died and we were unable to preserve his body due to the need for everything to stay intact for the medical examiner. This meant we couldn't have a viewing nor did we ever get to have a memorial service as every dime from the fundraiser went towards his cremation and the kids' keepsakes that contain his ashes.
Once the M.E report is back, I will be pursuing legal action against the hospital and travel nurse team that was hired by the hospital responsible. Thanks to the amazing documentation of our EMT, she was an eyewitness to them giving Ben the steroid while he was in a state of extreme super ventricular tachycardia (SVT). At no point did they treat this despite the EMT giving the triage his ECG printout. My son should have come home that night. He had no history of cardiac issues and all of his listed causes of death were directly related to the events that took place in the Emergency Department
Our Sweet Boy is with the Lord July 6, 2023
**On June 7th, 2023, Ben was taken off of life support after suffering an AFib/cardiac arrest episode that was brought on by prolonged SVT and steroids. On June 4th, 2023, he was brought to the ER for fluids and to make sure he didn't aspirate vomit from one of his cyclic vomiting episodes. However, the ER staff refused to listen to his mother/caregiver and disregarded the advanced life support alert that was sent by the EMT that discovered Ben's heart rate was over 220 bpm. This was confirmed by an ECG. Ben suffered a massive heart attack and was found to have been hypoxic long enough to cause brain death. He coded for over 30 mins and suffered injuries that he couldn't recover from. His family has spent the last 10 years, fighting for his life only to lose their child in such a cruel way. Had his SVT been treated, he would have come home alive. Instead his family now has to fight for the truth and hold the hospital accountable. Please share Ben's story and be his voice. You can follow his family on Facebook, for more details.**
We are glad to see new people visiting our fundraiser. We understand that not everyone is able to help. However, if you could please share our story, perhaps we will reach out goals. We appreciate all of the prayers and support from everyone.
Current need:
This is our Motorhome that we are raising money to repair. The generator, propane stove and hot water system are inoperable. We need to at least repair the generator, so we have access to power. We've put a great deal of work and money into it and it's kept us safe during our medical adventures. We need to be able to travel for work and for the kids medical needs.
Update #10 March 13, 2023
We want to live in a world where children are loved and valued. We want to live in a world that allows access to medical care without the risk of financial despair. It should never be this hard to care for medically fragile children, without losing everything you have. We pray that our little ones will melt your heart and give you hope. Through all their hardships, they remain happy and amazing children. Each child is talented and has special gifts. Help us maintain the course while we navigate the obstacles ahead.
This is one of Noah's adorable drawings!
Mom was T-boned on Dec 13th. The truck was a total loss, but was still financed. January 3, 2023
On Dec 13th 2022, Christina was t-boned after their vehicle stalled and sent them into oncoming traffic. Vehicle is a total loss, but was still financed. The family is now left with no vehicle and will have put 10k into a loan with nothing to show for it. We have no idea why we are under attack, but the devil is trying to destroy us. Ben has been signed up for the Make a Wish Foundation. His health is compromised and we are waiting for additional tests to come back. We ask for your support and prayers during this time.
Our Sweet Boy will need to stay to continue treatment until March. December 13, 2022
We have the opportunity to stay through March but will need your assistance to do so. We have applied for every service possible, but not one single program has followed through on their promises and offers. This shouldn't surprise anyone, as the govt will never care about families like mine. I can only pray that we mean something to someone somewhere. Ben's genetic testing is being used to help his younger brother and others who suffer from the same gene deletion. We know God can heal and pray that's His will. However, children don't always get better, but God can use their lives to help others and we hope that Ben can be a light unto the world, just as he has been a light in our family. We ask for your support.
Update #11 November 30, 2022
Update #10 November 30, 2022
Medical November 30, 2022
I wanted to provide a little bit of his background. While we understand that people are not entitled to this info, we want to remain as transparent as possible.
Meet the Sweetland Family November 29, 2022
We are the Sweetland's. We have 4 children; Viktor, Logan, Ryley, Ben and Noah.
Ryan and I own Sweetland Repair & Low Voltage LLC. We specialize in smart home setups for disabled and special needs clients as well as standard ResCom clients. We have been unable to book appts due to the round the clock care that is needed for Ben and Noah. We homeschool three of the children due to their medical and safety needs. We ask for your support while we do our very best to provide the care and medical treatments that are desperately needed. Thank you for your prayers and support.
Please consider our family for your #GivingTuesday donation. Thank you so much.
A day in the life of the Sweetland Family. November 15, 2022
A typical day for our family begins with 5am medications, incontinence care and liquid nutrition feedings. Ben often wakes up from seizure activity and is extremely aggressive and at times, violent. It takes both parents to maintain Ben as well as care for and homeschool their three children. Therapies and doctors appointments are riddled throughout each month between all 3 children. All three require specialized care. All three are on the Autism spectrum.
Noon medications and lunch breaks consist of feeding struggles and sometimes hugs if we are lucky. Ben can be so loving when he isn't in pain. He has begun to lose some of his singing abilities due to the esophageal issues he has been dealing with. It's the only window we have to his inner voice. This once pitch perfect child is being silenced by illness, but we trust God and our wonderful medical team. We know he can beat the odds. We learned to use Ben's Echolalia as a means to communicate with him. By parroting sounds and songs, he tries to let us know what he needs. We usually have more appointments than we can handle, but take on anything we can to help the children have the care they need and deserve.
Dinner and bed time are difficult usually, but we do our best to make it fun. Noah and Ryley have their own health and neurological illnesses. We juggle everyone's needs, despite how difficult it can be. Ben's siblings are so supportive of their brother. Each takes time to play with Ben and watch movies with him. On good nights, we pile onto our bed and watch movies. On bad nights, we do not sleep. We work through the night to provide round the clock care for Ben during his seizures and episodes. He is nearly 5 feet tall now and has really become hard to control, but we do the best we can and aim for his safety first.
Everyday is a little different. Some are easier than others. As you can see, there is rarely time to work or hold jobs for now. Caregiver/staff are in high demand, but currently not an option for us. Hopefully, we will have some respite in the near future, but for now we remain diligent to our children. We need your support more than ever. Thank you for taking the time to hear our story.
PRAYER REQUESTS
Click the Pray button to let the campaign owner know you are praying for them.
