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Over the past six years, our family has experienced first-hand the outstanding level of care that CHOC provides children and their families. Our little superhero, Desmond (Des) Joseph, had quite the bumpy start to life, which means we've logged a LOT of time at CHOC. Des spent a total of 53 days in the hospital before he was even a year old—from the NICU to the CVICU, and the PICU to the Neurology Unit. In fact, we've stayed on every floor! Plus, we've spent hundreds of hours in their Rehab Department for outpatient physical and feeding therapy—along with countless other doctor's visits at their Clinic.

The doctors, nurses, therapists and staff at CHOC have done so much for Des and our family...so now we want to give back by walking for this phenomenal cause! The fundraising efforts of the CHOC Walk make an immediate impact on families going through the most challenging time in their lives.

Many of you know our sweet boy Des and his heart-melting smile, but not everyone may know his origin story!

It Started with a Bumpy Birth...

Nearing the end of a very long labor in June 2016, Desmond was born full-term via an emergency C-section because his heart rate and oxygen levels suddenly dropped--causing him to have an Hypoxic Ischemic Encephalopathy (HIE) event. After the doctors rushed to get him out, it took three attempts to get his heart rate back up and breathing again with the help of a ventilator. That period of uncertainty included some of the longest minutes of our lives, but we were so thankful that he pulled through.

Desmond's CHOC NICU Stay...

Within hours of being born, Des was transferred over to the CHOC NICU to begin a specialized cooling treatment proven to minimize the damaging effects of HIE in newborns—only offered at certain children's hospitals like CHOC. After the treatment, they did a MRI that showed some brain damage to the Occipital Lobe (vision) and the Basal Ganglia (motor skills)—but it could've been much worse considering what he went through. After a week, he was taken off the ventilator to finally breathe on his own for the first time—which also meant we could finally hold him and hear his first sounds!

The next three weeks in the NICU were spent trying to teach Des how to feed orally, since his swallow was weak and delayed. Although he made some progress, it wasn’t enough for him to get the nutrition he needed. So, the decision was made to put in a gastrointestinal tube (G-tube) that we could feed him through.

The day before Des was supposed to be discharged, we were delivered another round of bad news. The doctors discovered that Des had a rare congenital heart defect called, “Coarctation of the Aorta," which meant part of his aorta was narrowed and restricting the flow of oxygenated blood from the heart to the rest of the body. Being so close to finally taking our little boy home, we were devastated to hear this, but glad that it was discovered early on and it could be repaired via surgery. The doctors debated whether to keep us in the hospital to do the surgery then, or discharge us and perform the surgery later. Fortunately, the latter was agreed as the best approach, and after 27 days in the NICU, Des was finally able to go home for the first time (on his Dad's birthday).

Heart Surgery in the CHOC CVICU...

When Desmond was two months old, it was time for us to go back for another CHOC stay—this time in the CVICU to repair the coarctation in his aorta. The surgery was a success with the exception of one of his ribs getting fractured. It was tough to see our little Des with all kinds of tubes and IV lines in him once again, since it brought back memories of his early days. But our little Super Desmond made it through like a champ, and even the fractured rib didn't seem to bother him all that much. After a week of recovery in the hospital, Des was able to go back home.

We've been closely monitored by Desmond's Cardiologist since his surgery, seeing her regularly for repeat Echocardiogram tests. Thankfully, the repair site has remained stable as he's been growing, so he hasn't needed any further procedures at this point. Let's hope it stays that way!

Physical Therapy at CHOC Rehab...

After Des was discharged from the CVICU, it was time for him to start twice a week physical and feeding therapy sessions at CHOC Rehab (four sessions total every week). Early intervention is key for children who have gone through tough times so early on—giving them every opportunity to become the best they can be.

In physical therapy, Cathy and Noel (his fantastic therapists) helped Des improve his mid-line orientation, range of motion, sensory skills and muscle tightness those first few months. As those areas improved and he was able to tolerate more handling, then they focused on increasing his mobility and strengthening his muscles—particularly the head/neck and core, working towards sitting and rolling independently as well as longer periods of tummy time. He continued with PT at CHOC for eight months—making great strides and improvements! And much of that was also because we continued the exercises and stretches at home on a daily basis.

And Feeding Therapy at CHOC Rehab...

Desmond started his first round of feeding therapy at CHOC when he was two months old. His wonderful therapists (Erin and Silvina), did electro-stimulus "vital-stim" therapy on his throat while practicing his oral skills. It did improve his swallow by strengthening his muscles, but he still struggled with the coordination of the suck/swallow/breathe pattern and his tolerance for feeding therapy wasn't the best at that time either—it was a lot of work for him for the little guy and tired him out. After four months, we decreased Desmond's feeding therapy to monthly check-ins at CHOC—and instead just focused our efforts on his home therapy program where we worked on oral stimulation exercises and tastes.

After Des was extremely sick just before his first birthday (more to come on that), his feeding skills experienced a pretty big setback as he was recovering in the coming months. He still wasn't regaining ground after he was fully recovered despite continuing with the daily oral exercises and tastes at home, so we were able to get back into CHOC Rehab for a second round of feeding therapy starting in February 2018. 

This time, we were with the Speech Therapy feeding team (the amazingly sweet and talented Nicole, Danielle and Michelle). For 16 months, we went twice a week for therapy—and Des made great progress at reducing his oral sensitivity to be able to tolerate things like toothbrushes and spoons inside his mouth. He steadily progressed to eating small tastes of baby foods and juices—improving the strength and timeliness of his swallow. He also made progress towards independent seating while feeding—graduating from mom’s lap to the tumble form chair, and then to his own wheelchair. Feeding will likely be a long road for Des, but with the help of the CHOC team, we’re determined to get him eating a full meal one day!

A Week of Tough Diagnoses...

Due to Desmond's birth injury, unfortunately several neurological issues have manifested themselves. When he was five months old, we took Des in for his neurology check up. Although Des had been doing well, he still had a lot of spasticity and tightness in his muscles (referred to as high tone or hypertonia). Because they knew this stemmed from his birth injury, they formally diagnosed him with Cerebral Palsy (CP). This was very difficult for us to hear, since it is a permanent disability—dashing our dreams for a "normal" life for our little boy. However, it is also a very generic diagnosis with a broad spectrum of symptoms—some people have CP and you'd never know it, while others have significant issues because of it. We try to stay optimistic and hope that with all the treatments and therapies, Desmond's strength and determination, and the love and support of family and friends, the issues he'll face will be able to be overcome, or at least manageable.

As if that bad news wasn't enough, we took Des to his Orthopedist check-up the following week—which we had been seeing on account of his feet being turned outward and upward because of the way he was positioned when he was in utero. We got there and they had us do an x-ray, but much to our surprise, it wasn't of his feet—it was of his hips. We knew his hips were tight, but we had thought that was just because of his high muscle tone. However, the x-ray showed that both of hips were completely dislocated due to a neuromuscular imbalance (which is common in children with CP and high muscle tone). We were in total shock! 

The doctor explained that there are numerous treatment options that we could explore, but it would be a long road. To start, he recommended we go see a PMR specialist to try to help Des with his high muscle tone and maximize his range of motion. She started him on a small dose of muscle relaxant called Baclofen, which has helped ease his muscle tightness and gave him more control over his movements. It also helped him make more gains in physical therapy. We also started to do Botox injections in March of 2018 (yep, Botox...what people use to get rid of wrinkles!) to help relax his hip adductors and hamstrings to give him even more range of motion—and help him with sitting up more comfortably.

And Then the Seizures Started…

When Des was seven months old, we took him in for another Neurology check-up. We discussed with the doctors the benign “startle” motions Des was having—and that they were getting stronger and more frequent. So, they wanted to immediately admit him to the Neuro unit at the hospital for an overnight EEG w/ LTM monitoring. The test results determined that his “startles” were in fact myoclonic seizures. Fortunately, we were able to get them under control with the right medication after a couple of months. Over the next year and a half, we went back in for routine EEG tests (some overnight) and fortunately no additional seizures were detected, but still quite a bit of abnormal activity when meant he was still at high-risk for seizures.

We had a good seizure-free run…until September 2019. That's when Des had his severe tonic clonic seizure and we had to rush him to the CHOC ER late one night. Luckily they were able to get it under control with multiple rounds of rescue meds and he recovered over the next couple of days. With regular EEG monitoring and carefully adjusting his meds as he continues to grow, we've been able to minimize seizures since--but it will be an ongoing battle.

An Unexpected Illness Just Before His First Birthday...

Des was on a really good run in April/May 2017, but then he came down with a viral infection...fever, vomiting, fussiness, broken sleep. We thought he was getting over it after about a week, but then one night he took a turn for the worst. He was crying, moaning, grunting, couldn't sleep, breathing faster than normal--so went back to our pediatrician who sent us over to the CHOC ER to run some tests. We thought they may discover it was some type of infection, give us antibiotics and send us home—no such luck. Instead, they diagnosed Des with a severe bacterial infection in his chest—also called pneumonia empyema. It was causing fluid to build up in his chest, which was preventing his right lung from fully expanding and causing his breathing issues. Thank goodness we took him to CHOC when we did because it can be life threatening.

They immediately began antibiotics, put him on high-flow oxygen to help his breathing and admitted Des to the PICU. Later that night, they had to put in a small "pigtail" chest tube to start draining the fluid from his chest. It worked well for a few days, but then they had to put in a second chest tube that was bigger to remove a large pocket of air that formed, and more of the fluid. They drained more than 600ml of fluid from his little chest…that’s more than 20 ounces!

We were very fortunate that between the fluid drainage and antibiotics, Des was on his way to a recovery—and surgery did not need to be performed. After nearly a week, Des was doing well enough to take him off the oxygen and a few days after that, the chest tubes were removed. Chest x-rays and blood work every other day, a couple of ultrasounds and one CT scan showed the infection had diminished enough to finally be able to take him home after 12 long days in the hospital. He would still need to be on antibiotics for another month, and get weekly blood tests, to ensure the infection was completely gone—and he finally got a clean bill of health mid-July 2017.

Cherishing the Good Times...

Needless to say, Desmond's first year was truly a rollercoaster ride with more than our fair share of health challenges. But going through all of this most certainly gave us a deeper appreciation of the good times we still got to experience in between the rough patches. Our hearts melted when we saw his first smile and heard his first giggle. And his smiles and giggles remain a constant even during the challenging times! We cherish all of the amazing cuddles and smooches Des gives...and all the nights Des falls asleep in our arms. We got to enjoy all of his first holidays…he made an adorable Iron Man for his first Halloween (we thought that was a very appropriate costume for our little superhero)…Christmas morning was made so much more special by having him there (the best gift ever)…and we celebrated getting through the first year with a big 1st birthday luau party!

Every developmental milestone Des hits is so much sweeter seeing how hard he's worked in therapy—and how hard we've worked at home with his exercises. Grasping objects for the first time. Rolling onto his side. Rolling onto his tummy. Pushing up on his arms during tummy time. Propping himself up while sitting. Learning how to sit-to-stand. Standing up while assisted. Eating his first bite of rice cereal, and other purees. None of this comes easy to the little guy—it’s all hard fought. But that's what makes Des such an inspiration to us and those around him.

A Much Smoother Second Year…

We're VERY happy to report that Desmond's second year of life was much smoother than the first! Seizures stayed controlled, no new diagnoses came up, no hospital stays aside from one overnight EEG test and sleep study at CHOC and only a few minor colds. We still had regular follow-ups with all of his 10+ specialist doctors (most who are at CHOC) to ensure he stays as healthy as possible. And he made lots of progress in all of his therapies... physical/occupational at CCS Tustin continued twice a week, in-home physical/occupational twice a week, feeding at CHOC twice a week, and we added weekly speech therapy at UCP Irvine in April 2018. We still continue all of those therapies today!

A Few Bumps in 2019...

As with any good superhero story, there were a few obstacles thrown Desmond’s way that he needed to overcome back in 2019. The first one came last September when Des started acting very strangely late one night. He had woken himself up coughing and crying in the middle of the night, which isn’t too unusual. But after we got him settled back down, he started to zone out and wasn’t responding to us when we tried to get his attention. When we went to pick him up, his whole body felt limp—but you could feel a subtle pulsing rhythm within him.

We had a bad feeling in our guts, so we quickly packed up his go-bag and headed to the CHOC ER. Shortly after we arrived, his symptoms intensified and it was evident he was having a major tonic clonic seizure—unlike anything he had before. The doctors gave him multiple rounds of rescue seizure meds and fortunately it finally stopped just before they were going to have to intubate him because his breathing was going to be seriously compromised. Des spent the next few days in the hospital while they changed up his seizure meds to try to prevent this from happening again. Luckily, he hasn’t had any other episodes since, but we’re being closely monitored by his neurologist since he’s now considered epileptic after that last event.

The second obstacle came just after new years when Des started to breathe very fast one night and run a high fever. Nothing we did was helping, so again, we took him into the CHOC ER. They put him on oxygen, ran a bunch of tests and determined that he had the beginnings of pneumonia. So they admitted Des to the PICU where he stayed the next five days to recover. Unfortunately, he’s at high-risk for respiratory issues because of all of his other medical conditions—so we try to keep them at bay with daily breathing treatments.

The third obstacle was major hip reconstruction surgery. If you recall from his first year, it was discovered that both of Desmond’s hips were completely dislocated because of his tight muscles literally pulling them out of the sockets. Surgical repair was recommended by the doctors, but we had to wait until Des was big enough to withstand the long and involved hip reconstruction surgery. Well, that time finally came at the end of April 2019, so we went up to Children’s Hospital Los Angeles (CHLA) to have it done. It was a very long surgery clocking in at 4-1/2 hours, but fortunately it went very smoothly. Des didn’t end up needing a blood transfusion or a pelvic osteotomy (cut in the pelvic bone), which was very good news. 

We only stayed in the hospital for a couple of nights and then we got to go home amazingly. However, Des would now be in an “a-frame” cast for the next six weeks while his hips healed—which goes from his upper thighs down to his toes and keeps his hips adducted with a metal bar between his legs. Not particularly comfortable for the little guy! The first couple of weeks were pretty rough, but then the pain and spasms improved and Des actually got more used to having the cast.

After 6 weeks, it was finally time to remove the cast, which we were all extremely excited about. Little did we know that this would bring Des just as much pain, spasms and discomfort as right after the surgery. So we endured a couple more rough weeks before he started to improve again. We also started intensive physical therapy (3 hours per week) for the next couple of months to get him back to his pre-surgery strength and abilities. That really helped him strengthen his muscles, improve his range of motion and got him back to tolerating weight bearing (standing) again. This wasn't an easy time for us, but we’re happy to have got it done and that it was successful. Hopefully in the long run, this will minimize any hip pain and maximize his mobility.

New Equipment Means More Independence…

Aside from the few bumps in the road during 2019, we were also busy trying to hook Des up with new equipment to give him more mobility and independence—as he continues to get bigger and bigger! The first item we got for him was a stander, which allows him to stand up all by himself but be fully supported—so he can practice weight bearing to strengthen his muscles. We first started using it in physical therapy, and Des had to work himself up to being able to tolerate about 30 minutes in it before we could get one for home. Although he didn’t like it at first, he accomplished that goal after just a few months and then REALLY started to enjoy using it! We still use it on a daily basis at home, plus they use similar equipment at school.

The second item we got for Desmond was his custom pediatric wheelchair. This was a very big deal for us, and a challenge on a few different levels. First, it was a tough pill to swallow as parents—coming to terms with your child not being able to walk (yet) and requiring a wheelchair is emotionally very daunting. There’s also the social aspect of it where you don’t want people defining, judging or limiting your child because of his differences—and those differences are front and center when he’s in a wheelchair. Then, we had to figure out how to use it, including taking it apart and putting it back together to get it in and out of the car—quite overwhelming at first! But we quickly became pros at it. However, all the challenges faded away once we got Des using it more and more—seeing how happy he was having an independent place to sit where he was fully supported, comfortable and safe. It also gave us more independence, too, since he had primarily been sitting in our laps! Plus, it’s helped Des improve his midline orientation, use of his arms/hands while in the chair and even strengthen his sitting outside of the chair. 

Now, the final challenge with the wheelchair was getting Des comfortable with movement—he was not having it at first. He would start crying anytime you tried moving him. So, we kept working on it and trying different tactics—and finally after six months, something clicked in him and he was okay with it! That opened up even more doors for him and us because now we could take him on the go and still keep him fully-supported. One of the biggest improvements was being able to go eat at a restaurant without us having to hold Des the whole time (inevitably leading to one of us eating cold food)—now Des could sit at the table with us, by himself!

The third item we got for Desmond was an adaptive communication device—another game changer folks! Des has global developmental delays, which includes his speech. He vocalizes with intent, but he hasn’t been able to say words yet. So we worked speech therapy on communicating in other ways—and ultimately getting him an eye-gaze communication device. This is basically an oversized tablet that has customizable screens with different words. It tracks Desmond’s eye movements so when he looks at the words he wants on the screen, it will say them for him. Yeah, it’s pretty darn cool! From the first evaluation we did with it, Des blew everyone away with how quickly he learned how to use it—especially since he’s still pretty young. We started with a one-month trial device over the holidays, and it was amazing. By the end of the trial, Des was saying 4-5 word phrases with it! It was clear this device would be hugely beneficial for him, so we started the process of getting a permanent one. Finally, after waiting for five months, we got our own AAC eye-gaze device, which we call his "talker"…and we were SO incredibly excited!

We've continued to use his talker at home, school and during 2x/week speech therapy to continually work on his stamina with it, build his vocabulary and ultimately communicate his wants and needs to us. As of late, Des has not wanted to do drilling exercises with his talker--it is physically hard work to use it and he is still a small kid after all. But he's been more receptive using it more organically, so that's where we've been focusing.

Looking to the future...

We still have a long road ahead of us, but we just take things one day at a time. We are optimistic for the future, and we will continue to work hard to overcome the obstacles that we'll face—with the goal of giving Des every opportunity to be the best little guy he can be. And most importantly, we cherish every moment we get to spend with Des...our little superhero.

With much love and thanks for your continued support,

Allison Camargo

Team Super Desmond Captain