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GOMADJumpForROHHAD Challenge

Aaron Hunters Social Media Video has had 90 thousand views on FB and 1350 views on youtube and has been online for 2 weeks !.  Raising Awareness is key for those battling ROHHAD.  We hope that the public keep viewing Aaron's Video.

The mission at ROHHAD Association is Global Awareness and also Fundraising to help Medical Research into ROHHAD.  Without Research we will not find a cure.  If you have watched Aaron's video and would like to do the challenge then please do so and post your video online #GOMADJumpForROHHAD.  Donating is easy too simply text JUMP29 £3.00 to 70070 (UK) or click on our donate now button on the website.

All support is appreciated.

Warm welcome to our new Trustee Louise !

Louise Wilson 1


The team at the ROHHAD Association would like to give a huge warm welcome to our new Trustee Louise Wilson.

Louise is very passionate about the ROHHAD Association and has been helping the charity throughout the past 6 months.

Louise has vast experience in fundraising and has organised many events in the past for various charities.  Mum to 3 beautiful girls and wife to Dean; Louise spends her time caring for her family and also volunteering for charities.

Her dedication and passion to our charity mission has been very apparent these past 6 months and it felt only natural that she would progress into the role of Trustee.

So welcome aboard Team GOMADForROHHAD Louise ! We thank you for all your hard work so far in volunteering and we look forward to working with you as Trustee.

Joshua’s Blog

Joshua 1

Blog - nursing

Earlier this week, I was the nurse on duty with my son for the 3rd night in a row.  I am tired from working my full time job,  trying to take care of normal household chores and from helping out at our local food bank (my husband and I joined several of his Co-workers to volunteer on behalf of his employer).

Back when Josh first came home from the hospital with a trach and a ventilator,  he was 9. And we had no nurses.  Our insurance didn't cover much nursing and our family had no money to pay for them.  So,  I acted as his nurse for the first year after he was diagnosed with ROHHAD.

I am lucky now that we found a waiver program that allows him to have Texas Medicaid and a program called CCP. It pays for nursing. We now have up to 131 hours per week of nursing care for Josh.  That is the only way I was able to go back to school to officially become a licensed respiratory therapist and hold a job.

But, even though we have a great crew of nurses who usually fill all our nursing hours, this past week, we had a major vacancy.  Our nurse who has been with the longest (for several years) who was scheduled to cover those nights had to be away with her dear husband as he was admitted to the hospital with pneumonia.

Luckily, he recovered and we got our nurse back. Now, I'm the one battling a respiratory infection myself.  So glad my nurses are back to help.

Why does Josh need a nurse, you might ask.

Breathing:  His brain does not get the messages that his body needs more oxygen and to get rid of excess co2. You or I would feel like we need to take big breaths, but Josh has no idea. He gets no short of breath sensations. So co2 builds and builds until it makes him so drowsy he falls asleep and can't wake up anymore. We can't let that happen, so we always have to check how much co2 he has building up and make sure he breathes off the excess.  We use monitors, ventilators and breathing pacemakers for this.

Hormones:  Dehydration:
He also stopped producing hormones.  One very important hormone is vasopressin. Our bodies usually produce this when we get dried out and need to hold onto more fluids.  His body doesn't get the message to produce it, so he can sweat and urinate far too much. That depletes his body of electrolytes and causes a build up of salts.  That can be deadly, causing blood to thicken and have trouble moving through the body, and causing trouble with the body's electrical system that makes our hearts beat correctly. So, we have to watch his output of sweat and urine and replace the hormone vasopressin with a special nose spray version so he stays hydrated enough. And we tell him often to drink, drink, drink.

Hormones: Stress
The body usually produces something called cortisol when our bodies face stressors especially when we run fever or are sick.  Josh's brain doesn't get that message that he needs cortisol to let his body deal with stress, so we have to give him a medication- a dose of hydrocortisone to help provide anti-inflammatory relief for his body.  You would be surprised how a tiny dose of this medication makes a huge difference in Josh.

Hormones: growth
Josh also does not produce growth hormone. He has had to have injections (shots) 6 days a week for the last 9 years.  That is the only reason he has grown so tall, and allowed his abdomen to stretch out some, giving his lungs more room to breathe.  His endocrinologist  (doctor who specializes in hormones) believes growth hormone even in small doses now that Josh is so tall, is important to his heart health. So, Josh still gets his almost daily shots.

Josh also does not naturally produce testosterone that is important for boys as they grow into men. He gets a big injection with a much longer needle once a month of testosterone.  I definitely let his nurses handle that one!

Breathing treatments: IPV
Josh came down with swine flu and double pneumonia a few years ago. We were afraid we were going to lose him. He was so sick.  IPV treatments (a special device that nebulizer medicine and sends it into the lungs in little bursts) began for him when he was hospitalized. We believe they cleared his lungs and saved his life.  He was sent home with a home version of the IPV machine and takes treatments on it twice a day religiously to prevent further pneumonias.  It has worked well, keeping him out of the hospital for about 6 years now!

Our nursing care for Josh is oh, so important. And we pray we continue to be blessed with nursing care for him for many years to come.

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