Help Heal Ada's Spine, before it's too late

Arda Jade Doobay is organizing this fundraiser.

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Hi, my name is Jade, I am the proud Momma of an amazingly brave, loving and sweet 11 year old girl, Ada. I'm going to provide a Brief Summary of our campaign, however I will also include the Full Story afterwards to share Ada's journey.

Brief Summary:

Ada is in a race against time to help stop, reverse and repair 11 years of nerve damage to her Spinal Cord. We are raising money to help cover the costs of treatment of the progressive Spine conditions Ada has been diagnosed with.

The money we are raising is to pay for Ada and I to travel to Fort Myers, Florida, where she will receive highly specialized treatment of her Spine. The clinic in Florida has treated patients for over 30 years, with the same conditions as Ada (Tethered Cord and Kyphosis) and many of their patients have been able to avoid surgery and drastically heal from their progressive diagnosis. Immediate access to this level of care, experience and innovative medicine for children is not currently available in Canada.

Full Story:

While pregnant with Ada, there was never any indication that Ada may have any health difficulties. When Ada was born, the doctors identified a sacral dimple, which can be an indicator of spinal cord anomalies, however the doctors did their spinal scan and ultrasound and assured us that it was purely a cosmetic issue.

Ada was growing well and just a typical baby for the first 3-4 months of her life. At age 4 months she started having extreme difficulty with feeding, vomiting and sleeping. We of course followed all the dietary restrictions possible, switched over to bottle feeding (with Mom's milk) we tried everything by the book but she still wasn't able to get enough nourishment due to the stomach problems she was experiencing. We ended up with a Naso-gastric tube at age 8 months old until about 12 months of age. Following that I fed her by medicine dropper for 2 years. Ada continued to struggle with stomach issues, we continued to see numerous specialists but never got any answers as to what was going on.

Ada began to experience repeated pneumonias and had difficulty with balance and sinusitis. I was convinced she wasn't hearing well but the ENT's didn't determine any hearing issues. We continued to adapt our lives, schedules and accommodate to help Ada grow, learn and be surrounded by friends and family as much as possible and to provide her with as typical a childhood as one can have while still trying to obtain answers and support for Ada.

Then March 2020 hit us all, a time I'm sure we all shudder to think about. Ada was in SK at that time and online school wasn't really working for our family. I ended up leaving my career and have been at home since. This time has allowed Ada and I to become very close and I feel blessed to be able to help Ada on her journey; I truly believe she is an angel.

The pandemic, as we all know, really slowed down access to specialists in Canada and as a result we had to seek out specialist care out of country in order to avoid further delay in diagnosis and treatment for our growing young girl. Early treatment is key to the best outcome.

In 2022 we travelled to Chicago to see an audiologist who confirmed Ada wasn't hearing beginning and ending of sounds of words consistently and she had some hearing loss in one ear. We went to see an ENT in Florida, who identified she had fluid in her ears which was contributing to her hearing difficulties and frequent ear infections. He performed a tube placement surgery and after that we experienced a significant improvement in her hearing and speech. But there were more pieces to the puzzle to come ...

About Ada:

If you were to meet Ada on the street, I imagine you would see a girl who is slightly delayed physically and neurologically. If you spend time with Ada you would be asked numerous questions about your family, background, likes/dislikes, musical tastes, hobbies, etc and you would see that she is very bright and loving. If you spent almost every minute of your day with her :) as her Mom and teacher, you would get to be with an incredibly smart young lady whose abilities fluctuate greatly throughout the day. This would be an utter mystery to you and you would spend many sleepless years trying to find answers. You would do anything to try to help this little girl to stay in those peaks where she's just a typical child who's not confused, feeling sick to her stomach, having blurry vision or fatigue and most of all, back pain.

Her Condition has been worsening:

What really frightens me is seeing a dramatic increase in her tripping, stumbling, falling, having vision changes, stomach pain causing extreme fatigue, severe pain upon getting up and needing help to move from a laying down position. Bladder and bowel changes, last year she started having accidents at night, which she hadn't had for many years. When her stomach is in pain she can barely put her words together, she told me herself "the pain is so bad I can't hear myself think" and "I need surgery, take me to the hospital" Which of course I did! We learned that she had constipation, which was treated aggressively and still persists.

We now know all of these symptoms are caused by her Spinal Cord condition. But at the time I was searching relentlessly for answers via alternative medicine, natural healers and numerous specialists.

At this rate I could see Ada was deteriorating quickly and could end up losing her ability to walk. We had to figure out what was going on, Urgently:

This led me to seek out a second opinion of her spinal x-rays from an Orthopaedic Surgeon at a world class Spine Institute in Florida. He identified a significant curvature of her spine leading him to diagnose her with Scheuermann's Kyphosis and also suspected another problem, based on her symptoms. He ordered an MRI, which we obtained in Texas, not wanting to wait 6-8 months in Canada, knowing that her condition was worsening. Following the MRI we returned to Florida for an assessment of the MRI and the Neurosurgeon identified a Tethered Cord.

This diagnosis explained so much!

My simple understanding and explanation of the issue: The spinal cord is connected to your brainstem and sends signals throughout your body via the nerves. A typical spinal cord is free floating in the spinal canal and ends in the lumbar spine region. A Tethered Cord is not able to move freely as it is tied in some way and as the child grows the cord is stretched, causing damage to the nerves which can be irreversible. Typically this problem is identified and corrected via surgery at the age of 2. Ada's symptoms started around age 3 months old which, which explains why Ada started experiencing

symptoms after having a big growth spurt from 0-3 months.

Surgery:

The Good news is there is a surgery available that can improve Ada's condition and stop further nerve damage, There's no guarantee on reversing the damage done, we will need to find alternative therapies to address that (MNRI).

The Bad news is since Ada's age is so advanced for this condition, there may not be a drastic improvement of her symptoms and of course with surgery comes a degree of risk, in particular spinal cord surgery. From the online community of patients with Tethered Cord and Kyphosis we have seen many cases of patients that have not experienced an improvement of their quality of life. In addition, the doctor in Canada has asked for a Brain MRI, which will require yet another sedation and add to the wait time for any potential surgery. There's a risk that she has intracranial pressure due to compressed veins, such a finding may impact the doctors decision to do the surgery - which means if she does require the surgery we would have to pursue it in the U.S, which is around $60k - 100k U.S.

How will the Go Fund Me funds raised be used? To pursue non-surgical healing:

There is a chiropractic clinic in Fort Myers, Florida (Caring Medical) that provides extensive diagnostics, customized treatment plan including prolotherapy, bracing, micro needling (acupuncture), weighting, posture therapy and more. With the diagnostics they will be able to identify any compression of veins, ligaments, etc and work to decompress those areas. The process begins with an initial consult, then travel to Fort Myers Clinic for the in person assessment, root causes are identified and a tailored treatment plan is created, treatment begins, treatment can take up to 6 months. With the cost of travel, accommodation, food, car and the treatment itself we will likely be looking at an expense of nearly $40,000 CDN

Why pursue alternatives to surgery?

Many patients with the same diagnosis as Ada have reported better outcomes from their chiropractic treatment than surgery, some patients have had surgery and not achieved their recovery goals while some others have only undergone chiropractic treatment and been able to avoid the need for surgery as they've experienced a complete recovery - This is the outcome I am praying for Ada <3

Time is of the essence, Ada has progressive spine diseases, which effectively progress more when the patient grows. Ada is 11 years old currently, as many parents know that's a peak growth time, so we are really working against the clock.

We have exhausted all of our funds:

We have exhausted all of our available funds in the past couple of years on treatment in the U.S. - most recently $40,000CDN for a Spine MRI and specialist assessments in Texas and Florida. Prior to that we have paid out of pocket twice for Ear Tube surgery and an Adenoidectomy and MNRI therapy, all of these costs combined have accrued to about $90,000CDN.

At last we have put our home up for sale but in this market we haven't had any offers in the last year and a half, we truly have put all of our resources to healing Ada and will continue to pursue that outcome for Ada, I know from the bottom of my heart that a complete healing is possible and already in the making for Ada, she will thrive and be free of the pain and suffering that has plagued her for her entire life.

We are so grateful for the support, expertise, prayers and love from our family, friends, doctors, nurses, online communities that support healing and innovative therapies, guides, mentors, coaches and inspirational stories.

Thank you from the bottom of my heart and Ada’s too, for your time and your support and helping to Heal Ada - It won't be long before we can say "Ada is Healed"