I wanted to share why this fundraiser we are doing is so
important to me and our family (warning you its kind of a long post).
I was so
lost for the first 11 months of Maximus life. It was extremely hard and we were told we would
probably never see another person with Goltz Syndrome. Now mind you there was
and still is VERY little information out there about it so we just didn't
really have anyone to turn to about it or learn of it. I was also very afraid
to use the internet to research it or find info about it because the day
Maximus was born we did that and I will never forget how scary and misleading
it was. At 11 months I decided I was going to start a Facebook page and see if
I could find someone out there that was or had experienced Goltz Syndrome. Come
to find out, there was already a group! I was quickly added and I cannot tell
you the relief that it brought me! I probably sat on my couch crying and
reading posts and talking with others (whom I am getting very close to and are
like my 2nd family now) for hours and hours. I was so excited for Tony to get
home so I could tell him "guess what? We're not alone! I've found a group
on Facebook and you will not believe the similarities between stories!"
and "It's totally normal for Maximus to not be eating as much as we think
he should be". SUCH A RELIEF. So much stress and heartache INSTANTLY gone.
I couldn't wait to share with our Dr's.
That next summer we we're able to raise
enough money to get to our 1st conference and research for Goltz Families and
guess what? We met 20 others affected by Goltz Syndrome and their families! 20!
It was the most amazing unforgettable experience. And we want to be able to go
every year so Maximus can see his 2nd family and his Goltz family. Very few know the feeling of meeting others that just get it. To sit in a room for hours and just talk about all the things we've been through as parents and to know that most likely EVERY SINGLE one of you have been there done that! I will never forget the 1st conference, I was so nervous to go into a room and talk about what I was going through with Maximus, but the relief both me and Tony felt after just a few min into the conversation was just so emotional and amazing. We all shared and exchanged procedures and what works best and behavioral patterns ect. I will also never forget the 2nd conference where I got to meet another mom that had a son with Goltz Syndrome. It is extremely rare for a boy to survive the womb with this condition. When we found each other we instantly felt like sisters! We just cried and cried and just got each other. I was then able to sit down with her son (who is 15) a few times and talk with him about his life and what it was like growing up with Goltz.
Now part of doing the
fundraising (which we hope to get something bigger by next year, a 5k in his
name or something), is to help raise awareness about this rare syndrome to help
others who find themselves in our situation not have to endure such a long time
with little or no information. We also want to raise money for the NFED
(National Foundation for Ectodermal Dysplasia's) who puts on these awesome,
incredible conferences and whom also sponsors families from all over the world
to get there.
Here are some top reasons we are raising money AND awareness:
1. To go to the conference every year and be with our 2nd family for a few days. I want to clarify that we don't want people to think we "need" the money. It's more for Maximus than our family as a whole.
2. Maximus has A LOT of medical stuff going on as well as daily/weekly routines to keep his skin as good as it is. I have listed some things at the bottom of this post if you care to learn/know more. We are currently seeking help in getting him on a permanent insurance because in the past when we apply he is denied, when we know he should qualify based on his medical needs. (It's very stressful)
3. We want to raise enough money each year to sponsor 2 families that need help or would love to come to the conference that have not been or cannot afford to get here. Especially our out of country friends!
4. One of the biggest reasons is to get awareness out there to Dr's and people about Goltz Syndrome. We knew very little and most of it was just what Google told us because we did not know where to go to seek more information. This is most of our Goltz families experience. We want to reach out to those with it and those that will be born with it as quickly as possible so they don't have to stress about it or feel alone for as long as we did or longer.
5. Maximus is currently on track as a 3.5 year old with the exception of speech. He is not talking well at all. We are trying to learn sign language and we would also love to put him in an outpatient speech therapy however this is not covered by insurance either. We also have an iPad for him that we can download apps onto for speech but they can get extremely expensive. We are really hoping he will eventually talk but we try whatever we can to prevent meltdowns and frustrations on both us as parents and him as far as communications. To put it in perspective, imagine going to a country where you don't know the language at all and that will tell you how frustrating it can be. So another reason for raising money is to help us and him find ways of being able to communicate with little or no meltdowns.
I cannot express the
gratitude I have towards those who've donated. You have no idea the emotions I
feel every time someone donates because of how much it means to me that you
care. Thank you!
Some more information about Maximus:
-He's had 9 Surgeries, Tonsiladnoidectomy, Orchiectomy, Heart Cath procedure, 3 Dental surgeries, laser eye surgery, tear duct procedure, and Syndactly (finger separation). He will have more dental procedures in the future to prevent further decay. He has no enamel on his teeth so they wrap them to prevent infection. He's had one tooth removed because it could not be saved.
-He has vision issues as well. He does not see as well out of the left eye and we do not know if he will lose vision in that eye, we are trying to do some patching as well as working with the district preschool to do as much correction as possible. He is now wearing glasses and has been for about 6 months and we know that it does make a difference! This is an expense that was not covered by insurance we had to pay out of pocket.
-Daily application of Cerave lotion. This helps his skin stay moist and not dry out and crack and bleed as much.
-Applying Kenelog (aka "shake lotion") we buy this from our dermatologist and it ranges in price depending on the price of the steroid at times. We apply this a couple times a week and when he is really itchy.
-Biafine I use this on him as needed now, when he was first born and up to about 18 months of age I used it everyday to heal a wound on his head, and heal his right leg scarring and some one his back and sides. I use it only when he breaks open skin or scuffs up. This is also not covered by ANY insurance company and we pay about $150 each time we buy it.
-Bleach baths are given about 3 times a week. 1 cup of regular bleach to 1 tub of water. This helps reduce infection to the skin. Its very safe for anyone to do!
