PLEASE HELP!

This little boy

is my little cousin Kael, and He means the world to me and my family.

But He desperately needs your prayer!

Today I received an email. The subject was Kael’s Diagnosis. Here is what the said:

“Kael had another seizure on Sunday. It lasted an hour and because of the meds to stop the seizure, he stopped breathing and had to be put on a ventilator. Thankfully, he only had to be intubated for about 8 hours. He’s doing better. Our experience at the hospital was wonderful – so that’s a blessing.

We have finally gotten a diagnosis for Kael’s condition…and unfortunately, it is much worse than we ever imagined. We had genetic testing done over six months ago and even though it should have only taken 2 -3 months to get back, the results didn’t come in until last Friday. It’s a very complicated diagnosis and at this point, we don’t really know much. I’ll write below exactly what the lab wrote – but let me preface it by saying that Kael may be on the milder side of spectrum when it comes to developmental delays. Right now, he is doing great – but over the next two years, we will have a better understanding of what his life will be like. There is hope and we are clinging to it. That said, here is the diagnosis:

“Interpretation
An SCN1A mutation has been identified in this individual. SCN1A mutations are most frequently associated with Severe Myoclonic Epilepsy of Infancy, but have also been reported in patients with related disorders (see below). Although many mutations are de novo (genetic mutation neither parent possessed or transmitted), some cases are familial. Consequently, testing is recommended for the parents of any child with an SCN1A mutation. Test results must be combined with clinical information for the most accurate interpretation.

Severe Myoclonic Epilepsy of Infancy (SMEI) also known as Dravet Syndrome, is an autosomal dominant epilepsy and seizure disorder of childhood onset. The incidence is 1 in 20,000 to 1 in 50,000, with males more commonly affected, 2 to 1. The first seizures are febrile or generalized tonic, clonic or tonic-clonic, and appear as early as age 1 month and typically in the first year. They increase in frequency and severity with time, and by age 1 the seizures are most often myoclonic, although other types, such as absence, partial and atonic seizures can also occur. As the disease advances, both psychomotor and cognitive growth begins to slow and eventually decline. Half of all SMEI patient suffer from ataxia (loss of coordination of body – tremors, etc) and cognitive impairment and 50% have an IQ below 50. As many as 20% will die between the ages of 3 and 5 years. SMEI represents the severe end of a continuum of seizure disorders with overlapping features.”

As you can see this is a very grim picture. But we have hope. Only supernatural strength can get us through this – but we are clinging to that. That is not to say that we haven’t and won’t continue to have dark days…or moments. I’m amazed how quickly I can go from feeling hopeful to feeling utter despair. But I must cling to what I know, not what I feel. And I know that God loves my little guy even more than I do and that this sickness does not define who Kael is. Even if we have to watch him become non-verbal or worse, he is still our beautiful little boy that has a God-given dignity.”

We do have hope. God is so incredibly powerful and has been reminder me of this so much recently. With Him ALLL things are possible.

I beg you to please help and PLEASE pray for him.

This is a link to a video done about a boy how has this condition. Just to show exactly what Kael is up against.

But no matter what God is still God!

Thank you for your love and support!
~Me