Supporting the Benson Family

Campaign Created by: BRYAN BENSON

The funds from this campaign will be received by BRYAN BENSON.

Goal: USD $1,800
Raised: USD $ 2,875

Greetings to all!

We have recently been blessed with a 4th child in February. He was born about 37 weeks ( a little on the early side) and only 5 pounds. We (doctor included) noticed quite quickly that he was not developing normally, and so received referrals and underwent tests. It was discovered through those tests that he has a rare condition. Though no specific name has been given to this condition, it is dubbed "Klinefelter variant 49 xxxxy". Normally, everyone has 46 chromosomes, Klinefelter Syndrome has 47, and Klinefelter "variants" can be labeled either 48 or 49, the last two being more severe as they increase in extra chromosomes. The web link gives a brief rundown:

https://thefocusfoundation.org/x-y-chromosomal-variations/xxxxy/

Once this was discovered, we spent untold amounts of hours/days researching about Klinefelter Syndrome, its variants, its prescribed method of treatments, and the best possible doctors to give him the best possible chances of success. By God's providence, we have been granted the opportunity to visit with a team of specialists dedicated to this type of syndrome (among some others). Through the "Focus Foundation", they are located in Davidsonville MD USA. We are scheduled to meet with them face to face August 16th 2022.

We have compared the options given to us and found that this team of doctors is Noah's absolute best chance and best opportunity, to possibly have a chance to live independently and thrive on his own once God calls on us to leave this world. It has been quite common in the past that living independently was not an option, but more recently, this team of doctors have had success in giving a small chance for this to be a reality.

Little Noah is almost 5 months now, and has finally reached 2 month milestones and some 3 month milestones. His growth chart has him lower than the 2 percentile in height and weight. He may be small and a bit slower in development, but he has an overabundance of character, and is such a happy little guy. Even though he is reaching his goals in physical therapy, he needs to receive testosterone shots that are vital to give him the fighting edge he needs to aid in his development. This will be something he needs to do for years to come.

This trip to meet with this specialized team of doctors will begin in South Florida, and by vehicle, travel to Maryland. With the shortage in personnel for air travel causing cancelations and delays or other unforeseen events, we could not risk flying. We also took into consideration that our little Noah has a higher chance of infections for respiratory illnesses with his condition that we do not want to risk by flying as well. The trip is a 16 hour drive and the specialists visits are spread through about half a week. The goal price was calculated for gas, food, hotel stays, one doctor office visit, and a car rental. My family works off of one income, and one parent stays home to tend to 4 children (homeschooling included) and an elderly grandmother.

I come to make an appeal to any who are able and willing, to aid my family in the travel expenses involved. We are thankful for any amount given as we know God provides. Most importantly though, we ask for prayers.

UPDATES

Update #9
October 6, 2022
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Our area took a devastating hit from the hurricane Ian. However, my particular location handled extremely well with nothing but a few days power loss and a couple small trees I needed to put support stakes in for. Unfortunately, many could not claim the same. It was also the case for our referral appointments who were virtually at the epicenter of the hurricane. Though the buildings stand, we will need to push back those critical appointments to a later date. We are attempting to get priority instead of being pushed to far out. 

Noah remains patient and well tempered, though it’s becoming critical that we get his surgery done as the latest X-rays show his pelvic bone is attempting to create a socket for his femoral bone by making a dimple in the bone. The older he gets, the more invasive the surgery could potentially be as his bones become less pliable/flexible.


Update #8
September 26, 2022
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It was indeed decided that Noah will need surgery. Before the surgery though, he will be referred to cardiology and gastroenterology. They wish to get it done ASAP, so we had pushed to get fast dates with the referrals. Hopefully we will not be delayed due to Hurricane Ian headed our way as some of the referrals were scheduled next week.

Please send us some prayers, as this is a big deal for the little guy (and his mommy) and if not well tended to, can come with some nasty repercussions.

Update #7
September 20, 2022
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About 3 weeks ago, it was determined that Noah did indeed have hip dysplasia. Each of those weeks has been quite difficult for Noah as each time we placed new hip harnesses he had got femoral nerve palsy. The main nerve to the leg getting pinched and causing the leg to go limp for a period of time. Unfortunately, he is burning through all his options in avoiding surgery.

On the other hand, he has received his first T shot and is doing well. I have noticed improvements in various ways. He continues to do fairly well in both his therapy sessions. 

We thank everyone for the continued support and prayers.

Update #6
August 19, 2022
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The last appointments yesterday update: 


They are almost certain that little Noah may have hip dysplasia which is common for his syndrome ( congenital hip dysphasia). So he will need to see an orthopedic doctor. He has an upper lip tie and 2 lip buckles (basically a lip tie but on the sides) that will need to be laser else they severely hinder speech and such ( this is also common with his syndrome including tongue tie). Apparently they are so tight it's making his gums white. They were surprised by how well he was eating. He may have to delay PT pending on the hip. 


All in all, this trip was everything we hoped for and more. It was nice to have doctors that knew more than us finally. This was exactly what little Noah needed. Many thanks!

Update #5
August 18, 2022
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2nd and 3rd appointments happened today. I believe they went pretty well. They do not want to do growth hormones until about the 2 year old range, and only if he fell behind in in growth. At this point they are thinking he may just have a more petite and small frame naturally. They ordered up the testosterone medication for us to pick up at home in which our pediatrician will give the injections. 


Also he went through the physical therapy appointment and did pretty well considering his condition and having no treatment shots yet. We have begun therapy 2 months prior and have worked ceaselessly with Noah. The results shown to them and they seemed pretty impressed with what he could do. He is almost 6 months and has reached many 4-5 month milestones, but of course this doesn’t mean he can relax now. They do want him to increase the amount of therapy in multiple types/styles.


A couple more visits tomorrow and we can start heading back slowly tomorrow.

Update #4
August 16, 2022
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First visit report. He seems to be doing far better than average (he eats about 40 oz a day, normally kids with his syndrome eat 12oz or so) with as much as he eats, problem with that is they say he should be bigger if that’s the case ( he only weighs 12 1/2 pounds at almost 6 months). They would need another test and he may need growth hormones in addition to the testosterone injections. They also are saying he is highly prone to respiratory infections more than the average person. They are also going to call in even more types of therapy than he gets already.

Update #3
August 15, 2022
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We’ve made it into Annapolis where we will be staying till Thursday, which is the last appointment date. Noah is still smiley and doing well regardless of the car time he has put in. His vast amount of patience is astounding and has handled two 12 hour car rides with ease (normally the total trip time is 16 hours but with the feeding stops and all amounted to a total of about 24+ hours). 

We used today to rest up for tomorrow begins his series of appointments. Again, a special thank you to all of you for the prayers and support.

Update #2
August 10, 2022
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Some of you have not received an email yet from me, apologies. Just know you haven't been forgotten and I will be getting to you. There has been some rocky situations lately, but everything is still a green light to go.

In just a matter of days, we will be heading out. This is all thanks to all of you who have given your support to help our little guy Noah. Noah is doing well and continues to smile (and giggle). 

Update #1
July 31, 2022
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My family and I are very appreciative of the prayers and support we have received. I must first make an apology for the generic auto email reply. I will be personally reaching out with an email tailored to each individual. 

I am also happy to mention that at this moment in time, we are just only a hair short of the goal placed. Some donations were made circumventing the use of this site in a more direct approach. With that said, we have all that is monetarily necessary for the trip, and are very thankful for this. As I try to figure out how to shut down the "donations" end of this campaign, I am hoping that I can still provide updates here later that you all can read about. 

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