dawson20
Earning My Ears
- Joined
- May 29, 2009
- Messages
- 15
Well Im going to give this a try...
We just found out this week that we will be heading to Disney/Give Kids the World in December for our son Brandons wish trip from Make a Wish!!
Brandon is 6 years old, and Tyler is 4 and they are both bonafide Disney freaks...
Our Disney story started when brandon was 1 and first got sick - after a totally, completely uneventful first year (seriously - eerily healthy baby), Brandon started struggling with walking at 1 year (after taking his first steps at 8 months old). A year of testing, and alot of scary progressing symptoms later we had our answer - brandon has a Mitochondrial Disease - Complex 1 Deficiency. At that time it was affecting the movement centre of his brain - while he was bright, and understood everyone, he could not get his mouth to work how he wanted, and was unable to speak. He also walked like a baby horse (ataxia).
Since then things have progressed over time. Brandons mouth struggles progressed until he started choking on food. We struggled to get enough food into him, and when he was ill he would stop eating completely. This past Feb he had a feeding tube placed for fluids and illness support.
He stopped walking completely after a mild viral illness in November caused further progression in the movement centre of his brain. And currently his GI system is slowing down. Any little illness tends to land him in hospital and sadly this past Christmas was spent inpatient. It's been a hard year with alot of admissions for him, and we decided it was time to start the wish proceedings as we felt he deserved a 'treat' after all of it.
Brandons disease is ultimately considered progressive, and in general it does not have a good prognosis - that said nobody knows how it will play out over time, and in fact current testing is indicating that I myself (mom) have the disease as well (it looks like ours is a 'maternally inherited' form). We try not to think too much about what the future holds and are too busy having a blast in the now to care.
His wish was cast in May, and approved very quickly and we scheduled our trip to land on his 7th birthday this year!!
We have quite a bit of time to get geared up for his trip - both the boys are already vibrating and we are so excited to have the opportunity to have this experience together!!
So thats us...
Some pictures to put faces to the names:
Brandon - He is a huge firefighter fan, and has gotten to be good buddies with many in our area!!
Tyler:
Looking forward to planning our trip with you all!!!
We just found out this week that we will be heading to Disney/Give Kids the World in December for our son Brandons wish trip from Make a Wish!!
Brandon is 6 years old, and Tyler is 4 and they are both bonafide Disney freaks...
Our Disney story started when brandon was 1 and first got sick - after a totally, completely uneventful first year (seriously - eerily healthy baby), Brandon started struggling with walking at 1 year (after taking his first steps at 8 months old). A year of testing, and alot of scary progressing symptoms later we had our answer - brandon has a Mitochondrial Disease - Complex 1 Deficiency. At that time it was affecting the movement centre of his brain - while he was bright, and understood everyone, he could not get his mouth to work how he wanted, and was unable to speak. He also walked like a baby horse (ataxia).
Since then things have progressed over time. Brandons mouth struggles progressed until he started choking on food. We struggled to get enough food into him, and when he was ill he would stop eating completely. This past Feb he had a feeding tube placed for fluids and illness support.
He stopped walking completely after a mild viral illness in November caused further progression in the movement centre of his brain. And currently his GI system is slowing down. Any little illness tends to land him in hospital and sadly this past Christmas was spent inpatient. It's been a hard year with alot of admissions for him, and we decided it was time to start the wish proceedings as we felt he deserved a 'treat' after all of it.
Brandons disease is ultimately considered progressive, and in general it does not have a good prognosis - that said nobody knows how it will play out over time, and in fact current testing is indicating that I myself (mom) have the disease as well (it looks like ours is a 'maternally inherited' form). We try not to think too much about what the future holds and are too busy having a blast in the now to care.
His wish was cast in May, and approved very quickly and we scheduled our trip to land on his 7th birthday this year!!
We have quite a bit of time to get geared up for his trip - both the boys are already vibrating and we are so excited to have the opportunity to have this experience together!!
So thats us...
Some pictures to put faces to the names:
Brandon - He is a huge firefighter fan, and has gotten to be good buddies with many in our area!!
Tyler:
Looking forward to planning our trip with you all!!!
