“Life can be extremely hard at times and we just break down and cry because of how difficult everything can get. When you are a parent of a medically fragile child you have to think about who is going to be taking care of your child when you no longer can. Even the thought of losing her to a possible cancer has me tearing up writing this to you.” – Josh
It was a beautiful October day for Renee and Josh Romo back in 2010. They were awaiting the birth of their second child and first girl. Everything had been within the norm during the pregnancy and every test had only brought great news for the family up until then.
When Jaidah was born, the doctors took her in for measurements and that’s when they realized something was not right. The beautiful little girl was supposed to leave the next day but the couple spent 3 days in that hospital where the doctors conducted multiple tests. Jaidah had posterior neck webbing, a cleft pallet, ribbon ribs and micrognathia along with a couple other abnormalities. She was then transferred to Lucile Packard Children’s Hospital in Palo Alto, CA.
3 more weeks were spent at the Neonatal Intensive Care Unit at this new facility where hundreds of tests were done to try and find everything that could be harming Jaidah’s health.
No part of this process was easy on Renee and Josh. It’s not easy to see your new-born child being kept for weeks in a hospital without even the certainty that she will ever leave. The poor little girl had to be fed by tubes as one of her conditions prevented her from eating normally. She had to go through a whole new surgery just to implement a G-tube so she could be properly and less painfully fed.
The parents, with enough emotional stress, had to be placed under a series of genetic tests to see if they could link any of Jaidah’s conditions to her family. Many tests that the doctors had as backup were inconclusive and the couple was left looking for answers. After this they were sent home and for the past 6 years they have been researching in their free time.
Even the most brilliant minds in the planet have not figured out everything about genetics and so Josh is left at home reaching dead ends where more information is not available. This makes it hard to understand everything that is abnormal about Jaidah’s health or even what consequences this might have in the future. Some of her missing genes are linked to cancer which obviously comes as a huge concern and example of what more the doctors might not know.
Besides Jaidah, this young couple has 3 other children but the 12 year-old son and the 8-month old twins can’t help a lot yet. Josh works multiple jobs with seed banks in the UK and US and has just started a cannabis edibles company. This is a lot of work for even a single man, let alone a father of 4. Renee works and is taking a phlebotomy course. With one parent having to stay home 24/7 it’s hard to maintain a job and a consistent education, this is why Josh takes many jobs from home so that he can always have an eye on Jaidah meaning that he spends most nights working and takes care of his children during the day. It is not an easy schedule to maintain, but one that Josh does out of love. They earn just over the borderline of poverty so the government can’t be of any assistance, yet this couple work extra hard to supply their children with what they deserve and need.
“With proposition 64 there are a lot of regulations that will ruin lots of small farmers and manufactures. The edible makers will be the ones most affected by this. We still have a battle in front of us to try and change some of these regulations.” And the war isn’t over for Josh and his family nor for anyone who still believes in the future of medical cannabis.
More recently they finally got a few diagnoses: cerebral palsy, scoliosis, sensory processing disorder, deafness and a couple others. These have been treated with a CBD tincture called Jayden Juice. The extract was developed by the brand owner Jason David for his son Jayden to help with symptoms of Epilepsy and Autism. Jason has helped the Romo family a lot with free products and amazing discounts.
Dosing control is a simple process as the medication comes in either a syringe or a dropper. Yet, with it all being a fairly new field, even amongst the most informed doctors, this couple got their information mainly off of other local parents that are also using the same brand of products.
It is also a great advantage that her condition does not require any THC. This way she is never “too high” on the medication because it does not get her high. If an unfortunate future may come that Jaidah develops a cancer, only then will her parents consider micro-dosing THC. But for now, the CBD is sufficient and has brought only benefits to this family.
What used to be defenseless and wandering eyes now have a confident look. Jaidah could now look at her parents directly after just two days of using the tincture. A hand that could not hold a pencil can now open enough to hold a bottle and confidently drink out of one.
Even though she can’t talk, it’s very easy for Renee and Josh to see when Jaidah is in pain. They started using Jaydens Juice THCa to help with pain and sleep. They did not want to give their daughter any pharmaceuticals. The THCa has done wonders and helped her relax enough to get some well needed sleep – something that many painkillers in high dosage would not achieve.
The only negative effect that Josh and Renee have found so far is that their daughter does not enjoy the taste of the tincture. It is a great sign that the only negative side effect of giving your 2-year-old daughter a medicine that saved her life is the flavor. Nothing that Jaidah can’t solve in the future with an artificial flavoring she enjoys.
Cannabis is proving wrong the doctors who said that Jaidah would never walk, talk, eat or even crawl. Small but steady steps are being made within this dedicated and loving family.
“I hope that one day my daughter will be able to have access to any medicine that helps her. Whether it be Jaidah growing her own or a caregiver growing it for her when I pass away. I truly believe that everyone on this planet should have legal access to anything that makes them feel better.” – Josh
Originally published in Weed World Magazine issue 130