Huxley & Rue Medical Help
Goal:
CAD $10,000
Raised:
CAD $7,975
Campaign funds will be received by Dustin & Kat Good
Huxley & Rue Medical Help
Huxley and Rue have had childhoods of chronic pain caused by conditions that have threatened their lives. God is opening doors to understand more about their conditions, but much remains unknown and we need your help.
Dustin and Kat have prayerfully decided it is now time to seek other options for their children’s sake. This is after years of in and out of top hospitals, seeking care from top paediatric professionals, some very scary moments, and faithful and faith-filled advocacy. The Lord is good and works in many ways and in His good timing.
Please join us financially and prayerfully supporting their search for solutions. To help ease the burden, to be the hands and feet of Christ to this wonderful family please donate to this campaign.
We do expect they will have to travel to the National Institute of Health in the US for assessment, individualised plans and therapies. Travel costs to appointments, time off work for Dustin, experimental/alternative therapies and functional health doctors, changes to their home to accommodate Hux and Rue, and some medications are all out of pocket or outside OHIP coverage.
With your support, Dustin and Kat will be able to access options otherwise out of reach and respond quickly to any therapies that are offered to relieve Huxley and Rue from the mysteries of what plagues them and what can offer long term health stability and a life without disabling pain.
Thank you so much for your care and support. This is what community is. Being able to ask for and offer meaningful help.
Rue
Rue's disorder reared its head in 2022. As of fall 2024 she is suspected to have a condition known as APDS. Her condition affects the immune system, weakening it resulting in frequent hard to overcome illness, and causing autoimmune issues (i.e. arthritis, IBD, etc).
APDS affects one in a million, and has only been recently discovered, so there are a lot of unknowns.
Those with APDS often have lymphadenopathy (enlarged lymph nodes) and issues with their spleen, symptoms Rue has shown.
Rue’s immunology team is talking with the National Institutes of Health in the U.S. where further assessments will be made.
Huxley
Watching Huxley and seeing what he's capable of you'd maybe be surprised to learn Huxley’s been suffering from chronic pain for over a decade. From when he was born, to it nearly taking his life, then a couple of years reprieve, to it now causing him significant pain again. It's been a roller coaster for him and his family.
He has had many, many hospital trips for appointments, clinics and admissions with this continuing foreseeably.
Huxley has also completed genetic testing like his sister with a mutation being confirmed but still being investigated.
Recent Donations
We collectively thank the Good family for all they, in turn, do for us. Even in their tough times.
Continuously praying for Huxley & Rue.
Praying always.
We continue to pray for you, our precious Huxley and Rue.
Sending much love 💗 and prayers to your precious family!
Love you guys.
Love you guys! God is with you through ups and downs and gives you the Spirit to strengthen you. Don't be discouraged. Your life and journey through it has purpose and meaning! You're wonderful kids and I know you can do great things in His hands.
Updates
Update #2
March 8th, 2025
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.
Huxley Update Nov 17, 2024
November 17th, 2024
Huxley was able to see a functional practitioner due to another patient’s cancelation Nov 14 which has led to Huxley and his parents feeling hopeful!
The doctor spent a ton of time going over dozens of labs, procedure reports, symptom history and she sympathized with the family’s frustrations, seeming to have heard them many times before.
They learned Huxley’s body is not able to absorb the nutrients from his food properly, which compounds his health problems. This is hopefully addressed, at least in part, with supplements to help nourish him to better strength and preparation for what comes next.
Praise God. More to come!
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