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Ride to Give - Supporting Silas' Saga
$16,519 raised
100% of $16.5k goal
766 contributors
0 days left
Ended Aug 12, 2017
6-year-old Silas Brown is a fighter who battles Hypoxic Ischemic Encephalopathy and Spastic Quadriplegia Cerebral Palsy among other diagnoses including Visceral Hyperalgesia. Please help us support Silas while he has no Medicaid due to his family moving.

Melissa and Matthew Brown knew something was wrong from the moment 6-year-old Silas was born and was completely silent. He was not breathing well, and his head was very misshapen. Melissa had had a very long labor and later found out Silas lost oxygen while in the birth canal which caused bleeding on his brain and a severe traumatic brain injury. Newborn Silas was taken to a different hospital and spent the next 14 days in the NICU. The Browns very planned, perfect little boy was struggling to stay alive.

During this NICU stay, Melissa and Matthew were told Silas had something called Hypoxic Ischemic Encephalopothy (HIE), a condition that occurs when the entire brain is deprived of an adequate oxygen supply, but the deprivation is not total. They were also told he would have a 25-50% chance of later being diagnosed with Cerebral Palsy. In addition to HIE, Silas had his first seizure at 3 hours old while in route to the NICU and started having episodes where he stopped breathing. They watched him have seizure after seizure, seeing his beautiful blue eyes roll back into his head and his body shiver and tremor. While in the NICU, there were MRIs, countless blood draws, feeding tubes, beeping machines, scary phone calls, failed attempts at nursing, pumping milk around the clock, and living in the NICU and Ronald McDonald House... but worst of all for the Browns were the team meetings to discuss what their child's future might look like.

When Silas was finally released, the Browns went home with pamphlets, early intervention paperwork, specialist referrals, home health nursing agency phone numbers, seizure medication, instructions on what to do if something were to go wrong, and much uncertainty. Over the next few months, Silas began having horrible seizures called Infantile Spasms. Silas suffered from over 50 seizures a day, and he was not meeting any milestones. At six months old he lost his ability to suck and swallow, and a feeding tube was permanently placed. His weeks were filled with doctor visits, EEGs, specialists, new medications, occupational therapy, physical therapy, speech therapy, case managers, and people constantly in and out of the house. It was overwhelming.

At nine months old Silas received his official CP diagnosis, the most severe form called Spastic Quadriplegia Cerebral Palsy, the type where all four quadrants of his body were affected. They were told he would most likely never walk, talk, sit up, roll over, smile. They finally found their groove with Silas at around 18 months old and began exploring other options for his care including intensive therapies, and reflex integration. It is a tough journey, but so very rewarding.

Recently the Browns relocated from Maine to New Hampshire to be closer to Boston Children's Hospital as Silas' care has become more complex over the past year with his diagnosis of Visceral Hyperalgesia ( a neurological condition in which the brain communicates to the stomach that food is painful) and the progression of medical issues from his CP and TBI. Melissa prepared for the move the best she could, researching every little detail that would need to be put into place to allow for a smooth transition when crossing over state lines with a severely medically fragile child. Most pieces of Silas's health care puzzle transitioned smoothly, and she felt like she was prepared and on top of everything from setting up home health nursing to finding a new PCP to finding the right DME suppliers. So much goes into his daily care, and every little piece matters.

But the biggest piece of the puzzle was switching Silas’s Medicaid over from Main to New Hampshire.

Melissa did everything as she should have. Before their official move, she received the required letter of Silas's terminated care from Maine and immediately applied to NH Medicaid, provided all the necessary documents. Unfortunately, after doing everything that was required, they are STILL left without any insurance coverage for their medically fragile child well into their first month of New Hampshire residency. They found out that legally the Disability Determination Unit has up to 90 days to approve Silas’s application.

Ninety days… three full months of care. Three months of supplying Silas with literally everything he needs to survive.

Insurance provides his private duty home health nursing care (9 hour shifts, 6 days a week), his feeding tube, his feeding supplies, his formula, his medications, his rescue seizure medicine, his inhalers, his wheelchair services, his physical therapy, occupational therapy, speech therapy, his diapers, his incontinence supplies, syringes, his chest vest machine to keep his lungs healthy, his doctor visits, half a dozen medical specialists, his Botox treatments to keep his muscles loose, his in home nursing, emergency visits if his tube clogs or his lungs fill with fluid, if he begins having seizures again or if he has extreme stomach pain. Medicaid rules Silas' life. His life ABSOLUTELY depends on his insurance, yet it seems New Hampshire does not have a policy in place to expedite the process of determining coverage for a medically fragile child who cannot afford a lapse in coverage.

Unfortunately, moving across state lines to be closer to Silas’s specialist at Boston Children’s Hospital has unexpectedly put Silas' life at risk. On July 16th, the Brown’s worst fears came true… they had to take Silas to the local ER, without medical coverage, because they could not adequately care for him at home and needed medical intervention. They were transferred out of state at Boston Children's Hospital, and although they know it is where Silas needs to be, they fear what financial burden could come of that decision.

When Ride to Give heard Silas’s story from Mighty Ivy’s mom, Shelly, we knew we had to help raise funds to provide the Browns with what Silas needs for the next three to four months. The funds raised will be used to pay any medical bills that won't retroactively be covered when Silas finally receives insurance. Since they are out of NH into MA, this will be important as typically they would need a prior authorization to be treated at a hospital out of state while on Medicaid.

The funds raised will also be used to purchase his medical supplies like feeding tube bags, formula, diapers, wipes, and Pedialyte. The funds will be used to pay for everything insurance would typically cover. It will be used to purchase his costly out of pocket daily medicines, one of them is $170 and the other over $500 a month. The Browns will also use the funds to help get Matt to and from the hospital while Melissa and Silas are at Boston Children's and for costs like parking and food while he's inpatient. Lastly, they will also use the funds to pay for a private respite provider for Silas to help Melissa with his care until his in home nursing services begins.

Thanks to the generosity of Silas’s followers, the Browns have received some of Silas's necessary supplies, but there is still so much the Browns need for his daily care, and sadly, this trip to Boston Children’s will potentially put their finances into a tail spin. Please help Ride to Give by donating to our fundraiser in support of Silas and his medical needs while without insurance.

You can follow Silas's journey by liking his Facebook Page, Silas's Saga,  their blog www.silassaga.com, and on Instagram at @silas_saga.

Contributions are solicited with the understanding that the donee organization (Ride to Give, 501c3 tax ID 46-2952297)   has complete discretion and control over the use of all donated funds.     Questions about how your donation is used can be answered by clicking here.    Please visit Ride to Give on the web at www.ridetogive.com or on Facebook at www.facebook.com/ridetogive.

 

 

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