Reed, Josh, & Family Needs

On Christmas of last year I took my husband in because I thought he was having a stroke. Josh underwent an mri and varies other testing and it was later discovered they had thought he had Leukodystrophy. Josh underwent genetic testing and he has Hereditary Diffuse Leukoencephalopathy with spheroids or ALSP is the other name they are calling it. We went to Mayo Clinic in Florida in March hoping he would be able to get an experimental bone marrow transplant to help slow the progression of his brain disease. There is no treatment for ALSP. We were able to raise the funds with so many generous people to get josh to Mayo and Unfortunately we were told Josh had progressed to far to able to get the transplant and for it to help him we were also told his life expectancy is 2-3 years.

After Josh was diagnosed we were given the option to have our children tested as there is a 50 percent chance it’s passed down to them.

On April 4th we received the Devastating news that our 2 year old son Reed also has the same brain disease as his dad. Reed underwent a sedated mri at St Louis childrens hospital on April 12th and again we were given the unthinkable news. They found areas of periventricular Flair hyperintensity white matter which is what we had figured but Reed also has suffered a stroke and brain bleed in the last few months they think but are unable to say for sure. He also has a condition called periventricular leukomalacia or PVL which is a brain injury he suffered at birth or shortly after but they are unsure. Nearly all babies diagnosed with PVL will develop cerebral palsy. We will not know the severity of it until he gets older. He also has a defect in his ear canal that showed on his MRI which will cause him to become permanently deaf. They are also unsure if he is having seizures or mini strokes because he’s doing a weird thing with his eyes. There have been many referrals put in to multi specialties for Reed. We are also in process of getting insurance approval for Reed to see specialist at Children's Hospital of Philadelphia.

He currently has an appointment set to see them July 21st. So we will be there from July 20th-23rd pending insurance approval so that he can see multiple doctors as well as their research team for Leukodystrophy. We currently do not know the possible outcome for Reed or his life expectancy but we are hopeful the children's hospital can give us guidance when we go.

We are so overwhelmed with the news we’ve been given these last few months and Right now we are rolling with the punches, trying to figure out how we can be the best parents we can be to help him live the most normal life possible. As well as give josh the best life I can with the time we have left with him. The last few months sure have been some of the hardest and most stressful times of our lives. We are so blessed and grateful to those who are following Josh & Reeds Journeys and those who continue to pray for our family. The money raised will go towards any out of pocket medical needs Josh or Reed may have, as well as towards anything they may need or want to make them comfortable during the time we have with them. Thank you all in advance for joining in on the go fund me and if you can’t donate at this time we ask that you please share it and to continue to pray for our family.

Thank you again.

The Warrner Family