Rue

Rue has a genetic condition called APDS that weakens her immune system and causes autoimmune disease. APDS affects 1-2 in a million, and there is lot that we don’t know about it. We are working with Columbia University to narrow down what type of APDS it is, and find the best treatment for her.

At this point, Rue is mostly affected by enlarged lymph nodes and an enlarged spleen, which interferes with gastric emptying and causes nausea, pain, decreased appetite. She also has pain that comes and goes affecting her back, ankle, legs. Next week she has an apnt with a reumatoligist to try and figure out what’s causing the limb/back pain.

Huxley

A scope revealed colitisand has been started on medication to treat that. A full body MRI lead to two diagnosis’ - CRMO (Chronic Reoccurent Multifocal Osteomyelitis) and JIA (Juvenile Idiopathic Arthritis). CRMO is a disease that causes inflammation of the bone marrow, and has resulted in Huxley having painful lesions on his spine, pelvis, hips, sacral joints, knees, shoulder, ankle etc.

Finding a treatment that works for CRMO can be a long and frustrating process - right now he is on a daily oral medication, and receiving monthly infusions of a chemo drug that we are hoping will help get rid of unhealthy bone and build up healthy bone in its place. CRMO is a disease that affects approximately 1 in a million. Hux now has three different automine diseases, and no one seems to know why this is happening, though it is assumed that there is a genetic cause.

Given that two of our children have extremely rare genetic conditions, we are working with a variety of practitioners, both traditional and alternative, to try and find the root cause, so that we can have more targeted treatment.

There is a large financial burden that comes from travelling back and forth to Sick Kids many times a month, hotels, equipment and therapy that is not covered, missed work when things are serious enough that both parents are needed, paying for alternative practitioners, etc. Some of Huxley and Rue's medications are covered by OHIP+, and some are not.

Praise God!

We know that all things come to us through the loving hands of our good Father. We have seen how having these extra challenges has caused many in our family to look to the Lord in desperation, and find peace and sanctuary knowing that our biggest problems have been taken care of in Jesus. We have experienced such love and care from our church family, which is of such value to us, and a great source of encouragement. We have seen how Rue’s recent struggles have lead her to look to Jesus as her Saviour and Lord. We have seen Huxley learn to find his identity in Christ, when so much of his “regular” life is on hold due to his health. We have seen our older children rise up to fill in the gaps when I am absent at appointments. We have experienced the beauty of falling apart only to find ourselves held together by our Heavenly Father. We are greatly encouraged to finally have some diagnosis and treatment plans, but know that there is a long road ahead of us in getting to the root causes, and finding successful treatment.

How to help

Prayer

pray for healing! Whether miraculous or through the hands of practitioners, we know our God is capable, should it be his will.
pray for mental and physical energy for Dustin and Kat in continuing through this long process
pray for Huxley and Rue, that they would feel the presence of their God with them as they navigate these challenges
pray for our other children - Beniah, Javan, Shiloh, Sparrow, Archer who are often “short changed” of their parents, and who are sad to see their siblings in pain and missing out
pray for wisdom in knowing how to process medical advice, and treatment options

Alsi, an occasional freezer meal is a beautiful thing - this allows the kids to pop a meal in the oven for supper on the days that I am away at appointments.

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