Attending the LSA conference for our son

Hello we are the Confer family and are currently trying to attend a Lowes Syndrome conference to learn about our sons condtion. The funds are to help us afford travel expenses, for our family to get there.  The conference is in Dallas, Texas. We are currently located in Portsmouth, VA. I normally would never post something like this, but I'm doing this for my son. He is why I'm able to swallow my pride and ask for help.

We learned 2 months ago that

Alexander is “1 in ½ million” – born

with an incredibly rare genetic

condition known as Lowe Syndrome.

Lowe Syndrome (LS) is a rare genetic condition that causes physical and mental handicaps and medical problems. It impacts the eyes, nervous system, and kidneys. There is a wide “spectrum” which Alexander could fall on with this diagnosis. So far, his case appears to fall on the milder side, but we have much to learn on this new journey. Which is why attending this conference is so important to me and my husband. However, with all the medical bills and my husband being our only source of income we just can't afford to spend the money.

Below are the characteristics of Lowe Syndrome, most of which he will

encounter at some point in his life time.

 

* Cataracts in both eyes, found at birth or shortly after.

* Glaucoma (in about half the cases)

* Poor muscle tone and delayed motor development

* Developmental/Cognitive delays ranging from borderline to severe

* Seizures (in about half the cases)

* Severe behavior problems (in some cases)

* Kidney involvement ("Leaky" kidneys, or renal tubular acidosis)

* Short stature

* Tendency to develop rickets, bone fractures, scoliosis and joint problems

* Expected life span of about 30-40 years if no complications. However, 2 years & 10 years of age were the youngest ages recorded to have lost their lives to this condition.

 

There is no cure for Lowe Syndrome,

but many of the symptoms can be treated effectively through medication, surgery, physical and occupational therapies, vision therapy and orientation and mobility services, and special education.

 

Alexander is still the same happy, sweet boy. He is incredibly smart already and is always so happy. We love our boy more than anything else in this world! It is a lot to process, but we will be advocating for Alexander every step of the way, and we will make sure he enjoys normality just like any other little boy! He can do anything he puts his mind to!

 

With limited research and knowledge

on Lowe Syndrome, we have many

questions ourselves, but we will learn along the way as well as contribute our own research during our journey. There is nothing he cannot do. If anyone has questions, I’m happy to answer what I can - please direct questions to me personally.

 

Any amount of donation to help my family make it to this conference will be greatly appreciated, your donations are helping us learn what we can do to

better help our son thrive with his difficult road ahead. All our love.