2019 challenges

byKayKeene1

1.2K followers

5 years ago

Treacher_Collins_syndrome

After quite a battle for my sister law and her husband to fall pregnant in Jan 2019 they were over joyed with the news that they were finally adding to their family. In Sep 2019 my sister-in-law Robyn gave birth to two beautiful twin boys Levi and Logan.

Logan was born with a rare genetic disorder called Treacher Collins Syndrome which is characterized by deformities of the ears, eyes, cheekbones, and chin. TCS occurs in about one in 50,000 people.

In Logan’s case, he is missing cheekbones, which caused his jaw to be recessed and his ears to not develop, so he is fed by nasal-gastro tube and slowly being trained to bottle-feed.

While in ICU, he had to be resuscitated twice due to airway problems. He then remained sedated & on a ventilator, fed by drip, for almost a month. ENTs then advised on tracheostomy.

After 58 Days in ICU, he finally came home.
He requires 24/7 monitoring & special care. His trachea needs to be clear & clean at all times to prevent blockage & infections which is a high risk with infant trachea.

The treatment plan is still to be determined, so the next step is further CT scans of his airways & ear areas.

Discussed Possibilities:
- Jaw distraction or tongue operation.
- Bone conduction hearing aids
- Cheekbone reconstruction
- Ear grafts

This is a challenge for his parents and our whole family as we adjust to caring for lil Logans needs.

I hope that my affiliate marketing skills and knowledge will grow during 2020 and be successful so that I can help with funds for the many surgeries lil Logan will need.

I would like to know if any of our WA community members have any family or friends with this syndrome and if you are aware of any support forms you could share with me.

Wishing you all the best for 2020

If you would like to know more about Logans condition you can view it here.