So I just spent 15 minutes typing this and it all deleted…so here I go again.
We found out Jayden does not have Hunters Syndrome. So what does that mean? It means that Jayden will have more blood work done to see if it is MPS III, Sanflippo Syndrome or another form of MPS, results take 5 days so we will hear back Tues or sooner. Pray for sooner. Also, it means Brooklyn is now 25% at risk because it is a recessive x-linked disorder that Justin and I now know we pass down. Pray Brooklyn does not have MPS. She will have a urine test done tomorrow when we go to Children’s in the city to meet with an expert on MPS at 11AM. We should get results back Friday. Right now, the only two syndromes with enzyme replacement therapy are Hurlers and Hunters which have been ruled out. Pray that whatever Jayden (and potentially Brooklyn) has will have a treatment/cure found in their lifetime.
We continue to hope and pray and lean on all our friends and family. In the last 24 hours we have had a prayer vigil set up by our dear friend, Katie where people prayed all through the night. We had the staff of Immanuel pray over us. We continue to receive e-mails and text of people praying. We had three of our friends bring us dinner last night and stay to share tears, laughs and stories. I believe God is listening and providing exactly what we need. We are feeling an unexplainable peace and KNOW it is God. We are ready for the “worst” and we are hoping for the best. We know God is not scrambling but we believe God is changing his mind due to your prayers. Pray we will continue to have an eternal perspective.
I also spoke with a woman from the MPS national society. She said we are doing everything we could do. She also said that it is strange that with Jayden’s presenting symptoms the results didn’t show MPS II (Hunters) because he doesn’t exactly fit the other MPS descriptions. Does this mean anything…we don’t know but we feel God may just be up to something. I said I would wear a sack cloth if God did a miracle but don’t hold me to that…I love Old Navy too much!
We continue to rely on you, and thank God for you in our prayers. You sustain our minutes, hours, and days of waiting. We rejoice that people who don’t regularly pray are praying, and Jayden is already doing greater things for the kingdom than any other 3 year old I know. We are on earth to draw others to Christ and this is what his life is doing in astounding ways now and will continue to do throughout his lifetime–long or short! I hope God will be able to say the same for us all!
Love you and will keep updating as we hear.
“These things I have spoken to you, that in Me you may have peace. In the world you will have tribulation; but be of good cheer, I have overcome the world.” (John 16:33 NKJV)
(thanks for this Burt!)