Oxygen Treatment for Rare Disorder

Our son, Cameron was placed in an induced coma during his 5th birthday in an attempt to stop his continuous seizures.  He was forced to undergo a battery of tests to try to figure out the source and was given a trach to breathe and a gtube to eat.  His world (and ours) forever changed  on March 13th 2016. Cameron was diagnosed with a rare seizure disorder called FIRES.   It only affects 1 in 1,000,000 children.  “Febrile infection-related epilepsy syndrome (FIRES) is a severe brain disorder that develops in previously healthy children after a fever. This syndrome causes a very sudden (acute) onset of nearly continuous seizures (status epilepticus) which do not respond to seizure medications (medications to stop seizures). When seizures cannot be controlled by medication, they are called refractory seizures or refractory epilepsy. Sadly many children with FIRES do not live past the acute phase.” – Genetic and Rare Diseases Information Center

http://baltimore.cbslocal.com/2016/05/04/rare-neurological-condition-md-boy-facing-has-left-doctors-puzzled/

http://wjla.com/news/local/five-year-old-with-rare-disease-released-from-hospital-after-74-days

Fast forward 19 months and on the outside Cameron seems  to be healed.  No more trach.  No more gtube.  A modern miracle!  He is walking, running, playing and smiling but he is still not our Cameron.  He continues to have seizures and we don’t know the cause. He has been left unable to speak, his eyes are often vacant and cognition is not where it used to be.    His behavior can be infantile and hard to handle.  His hugs are short and he no longer asks to cuddle.  He does not play team sports because he cannot follow directions.  It is not easy to find care for him because of his complex nature and his inability to follow directions.  Yes, on the outside things seem to be fixed but he still has a long way to go.  We have not given up hope that Cameron will have the normal life that he deserves.

We have prayed for over a year for an answer and we believe that we may have found it; Hyperbaric Oxygen Therapy (HBOT).  HBOT is a medical treatment which enhances the body's natural healing process by inhalation of 100% oxygen in a total body chamber, where atmospheric pressure is increased and controlled.  The treatment is unconventional but has been known to work.  Unfortunately, this is a treatment that is not covered by insurance. Prior to now, we have been blessed to be able to afford Cameron’s mounting medical bills and expenses that are a direct result of his rare condition.

Friends and family, we need your help. We are reaching out to you to ask for your help in making a miracle come true for Cameron. 

http://www.hbot.com/faq

http://hbtusa.com/treated-conditions/

No treatment is 100% guaranteed but we feel that this has a great probability.  Currently his treatment is medication.  Medications that result in side effects that impact cognition and even cause seizures!  Also, the medication is for the purpose of controlling the seizures but we don’t have an answer for healing Cameron.  We still pray for total restoration!  We still believe.

 “In CP and TBI patients, some of the injured brain tissues may be "dormant" and non-functioning. HBOT can stimulate these "dormant" tissues and return them to more normal function.  In young children, cognitive function and spasticity can be improved.  Hyperbaric oxygen therapy, used in conjunction with other therapies, ensures the best recovery possible for children with cerebral palsy and traumatic brain injury.” – Harch Hyperbaric Oxygen Therapy

We believe in this enough that we are willing to relocate to New Orleans for two months for the first round of treatment.  We want Cameron to be treated by the  world renowned HBOT medical professional, Dr. Harch.  Unlike many of his colleagues, Dr. Harch has vast experience in dealing with epilepsy and autistic children. 

The first round of treatment is $9,000 (it may require several rounds).  We will travel back and forth to New Orleans during this period of time (2 months).  This will require housing, plane flights, etc.  Please continue to join as we chase hope and support our miracle baby, Cameron.  We thank you for your continued prayers and in advance for your financial support. 

 40 HBOT treatments @ $200 = $8000

Doctor Fees for Treatments = $1000

2nd Round of HBOT treatments @ $300 = $12000

Housing @ $90/day for 60 days = $5400

Airplane Transportation @ $500 round trip (8 round trip tickets) = $4000

Total anticipated expenses = $30,400
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Organizer

Zarinah Cuffee 
Organizer
Odenton, MD
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