This family is a very devout Catholic family who suffers incredibly. This is not an updated list of the things going on with them. It has gotten much longer. This last week their mother Lisa who has the same problems as the children had a shunt put in her skull for brain pressure after a stroke last spring and a spinal untethering which didn't heal quickly. They have 8 children and ALL HAVE THESE DISEASES. They are heroic, live providentially and their dad is a Mail Carrier. Every single gift, every single kindness they are shown they thank God for those that are put in their lives. It is apparent that they live at the hospital and have influenced MANY, MANY people with their unconditional love, faith, and offer all of their suffering for those in purgatory and to our Blessed Mother. Please pray for them. I saw Lisa before she had surgery this last week and she was SO, SO TIRED. I frankly don't know how she does it. She homeschools, their van broke down, the daily appointments 70 miles away in Seattle etc. God is working mightily!! Have Mercy---say a prayer for them!! * 2 with Type 1 diabetes on insulin pumps and internal glucose monitoring systems * 1 with a very rare metabolic disorder 3- Beta-Ketothiolase Deficiency (KUD, Ketone Utilization Disorder,BKT) - missing link in a chain of amino acids without which isoleucine cannot be processed. He cannot process protein * all 8 have Tethered Spinal Cords * all 8 have Ehlers-Danlos Syndrome - a connective tissue disease * 6 have Chiari Malformations - a brain malformation of the cerebellum * all 8 have Tourette's Syndrome -a "hiccup" in the brain * 1 had a Stroke * 1 has vascular fragility * 2 with seizures * 3 have osteo-arthritis * 2 have a dilated aorta * 1 has a bi-cuspid aortic valve * 2 have had Supra Ventricular Tachycardia - a heart arrythmia (very fast - over 200 beats per min) * 1 has Left Ventricular Hypertrophy(a form of cardiomyopathy) and high blood pressure with it. * 6 have Dysautonomia - an inability to regulate those functions we have no control over such as heart rate, temperature, blood pressure,digestion and much more 1 had Serum Sickness 2 have had brain surgery 6 have had a de-tethering of the spinal cord 1 has a VP brain shunt for raised intracranial pressure (pressure in the brain) 1 has chronically raised CO2 in the brain 1 has Enthisitis Related Juvenile Idiopathic Arthritis 2 have a Mitochondrial Disease We have been in the O.R. in New York 17 times now and several times for heart and kidney stuff at Children's Hospital Seattle.
What an awesome cross they are offering up!!!I have put them in my daily prayers and Adoration of The Blessed Sacrament.I hope they will off some crosses for my family's spiritual conversion and 1 with severe addition.
Astonishing, inspiring. I will pray for them but oh how I wish they might pray for me; their prayers must have the most awesome power before God.
Without a shadow of a doubt. God is so close to this family. Can see Father God so close. I will pray for them, bless their hearts, they uphold the world with suffering like that..
Our Heavenly Father must be so close to this family, they hold the world up with their suffering, and balance out the love against evil... and purity of heart against evil intentions. I thank God for families like this, although their suffering is immense. Bless their hearts, God will balance everything out. They are a contradiction to our governments, to Euthanasia and Abortion. God bless them..
Thank you all. I am continually amazed by them and their heroic virtues. I am always speechless when I hear of one more thing added to their plate. Your prayers and insight are beautiful. Thank you.
I will put in a prayer petition for this family when I am at Mass tomorrow night God Bless them, we really are not thankful enough for our blessings
When it rains it pours...PLEASE,PLEASE PRAY FOR THEM!! The mom just had brain surgery--again.... Written 1 hour ago At the risk of sounding like a serious whiner.....when it rains it pours. It's been raining and pouring. The day I got out of the hospital the dryer broke and in a huge family this is truly a disaster! So off to the laundry mat we've been going (incisions and all). Then the refrigerator decided to act up and freeze everything, it's kaput. The next day the septic was backing up into the tubs so Ed rushes home from the post office, digs up the darn thing and is laying on the ground in his uniform as he's rained upon, unclogging the wonderful thing. It now has to be pumped. That same day the college where Mary goes presented us with a huge bill because between hospital visits I stupidly forgot to file my Intent to Homeschool with the district. After huge effort I got it starightened out...again, with tears. Our roof has to be replaced and during the inspection they found a broken truss which Ed thought he could fix from below but today found he cannot. Almost last and certainly not least our brand new (new to us that is) van is leaking water, actually gushing water from beneath the dash board into the interior. I am sad. Last but not least, the flu-ish thing going around the house has reached immune suppressed Mary. She has bright pink cheeks and is already in bed. I am hoping and praying it will pass without a problem. We cannot give her her Methotrexate with an illness brewing. Frankie got the bug and thankfully did not develop ketones which was a huge blessing and surprise. He's so good now about knowing himself, checking for ketones and doubling up his Bi-Citra and L-Carnitine. He hasn't been hospitalized for quite some time. He's awesome. It's been a long, soggy, expensive, teary week around here. The tubing in my tummy is causing some pain....enough to stop me in my tracks many times a day. Steven had this too when his shunt was placed and he would double over, be covered in sweat and just moan. It was so terrible because we didn't know what it was and he was in such pain. It lasted a couple months so I'm hoping for less time We have much to be thankful for but recognize we know this by the valleys we travel through. We've been traveling After daily calls from the UW....Grrrrr...... I went in and had my stitches out and everything looked good. This setting they reprogrammed me to is too high but the other was too low. There is another shunt that has more settings and they still would like to put in a different one, but there is no way anyone is going into my brain again right now, especially this time of year. I need a break to care for my family and give my poor husband a break. Mary had an infusion this week and she and Frankie see bio-chemical genetics next Tuesday. We are doing the very expensive buccal swabs for the mito testing next week and they will be overnight expressed to Children's Philadelphia. The physician doing them called today and took off one hundred dollars from the total because insurance does not cover it. That was very kind of him. It may not even give us an answer. It tests for only 2 of the 4 complexes in the cellular respiratory chain. Bobby is due for his nephrology appointment and echo of his heart as well as neurology. Frank is due for cardiology and neurology. Steven is overdue for a neurosurgery/shunt check. He very soon will need surgery for tubing. He's grown more than 6 inches since it was placed. 4 of the kids need N.Y. checks but a trip across country is just not happening right now. That's all that's been going on around here besides homeschooling and serious political talk !! We had a bit of a debate party last night, it was fun! To my lovely friends...I'm sorry I haven't called or answered calls. My first job is this family and it's all I've been able to do each day. I'll talk to you soon when my brains are working again Oh...and in case your wondering....I look like the back end of a racoon with this hair....just sayin'.... Blessings on you all and especially our medical friends...everyone seems to be struggling right now. Lisa "Always receive with equal contentment from God’s hand either consolations or sufferings, peace or distress, health or illness. Ask nothing, refuse nothing, but always be ready to do and to suffer anything that comes from His Providence." ~St. Teresa Margaret Redi
